An investigation of the continuum of care as experienced by Victorian adults with moderate to severe traumatic brain injury and their significant others
Anna M O’Callaghan Bach Hlth Sci (Sp Path)(Hons)
Thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy at Charles Sturt University.
September 2009
I TABLE OF CONTENTS
LIST OF TABLES ...... X
LIST OF FIGURES ...... XV
ABBREVIATIONS ...... XVI
CERTIFICATE OF AUTHORSHIP ...... XVIII
ACKNOWLEDGEMENTS ...... XIX
FINANCIAL SUPPORT FOR THIS RESEARCH ...... XX
Paid editorial assistance ...... XX
ETHICS APPROVAL ...... XXI
PUBLICATIONS AND PRESENTATIONS ARISING FROM THIS DISSERTATIONXXII
Journal articles ...... XXII
Conference presentations ...... XXII
ABSTRACT ...... XXIII
AN INVESTIGATION OF THE CONTINUUM OF CARE AS EXPERIENCED BY VICTORIAN ADULTS WITH MODERATE TO SEVERE TRAUMATIC BRAIN INJURY AND THEIR SIGNIFICANT OTHERS...... 27
CHAPTER 1 ...... 27
OVERVIEW OF THE THESIS ...... 27
1.1 Introduction ...... 27
1.2 Influence of Consumers on Service Provision ...... 29
1.3 Importance of Considering Consumer Preferences...... 32
1.4 Motivation for Completing This Study and Position of Researcher ...... 35
1.5 Aims and Scope of This Study ...... 37
1.6 Map of Thesis ...... 39
CHAPTER 2 ...... 40
PERSONAL IMPACT OF TBI ...... 40
2.1 Introduction ...... 40
II 2.2 Traumatic Brain Injury ...... 40
2.2.1 Definition of Traumatic Brain Injury ...... 40
2.2.2 Pathophysiology ...... 42
2.2.3 Epidemiology ...... 43
2.2.4 Risk Factors ...... 44
2.2.5 Severity Levels ...... 46
2.3 Impact of a Person’s TBI on The Family ...... 56
2.3.1 Definition of Family Caregivers ...... 57
2.3.2 Impact of Caring on Family Functioning ...... 57
2.3.3 Caregivers’ Needs Following TBI ...... 61
2.3.4 Caregiver Burden and Depression ...... 63
2.3.5 Moderators of Caregiver Burden ...... 72
2.3.6 Support for Families Caring for People With TBI ...... 78
2.4 Summary ...... 81
2.5 Conclusion ...... 82
CHAPTER 3 ...... 83
THE CONTEXT OF TBI REHABILITATION ...... 83
3.1 Introduction ...... 83
3.2 Rehabilitation ...... 84
3.2.1 What is Rehabilitation? ...... 84
3.2.2 Rehabilitation and Traumatic Brain Injury ...... 85
3.2.3 Reasons for Referral to TBI Rehabilitation ...... 89
3.2.3 History of TBI Rehabilitation ...... 93
3.3 Clinical Care Guidelines ...... 95
3.3.1 The Development of Clinical Care Guidelines ...... 95
3.3.2 Critique of Guidelines ...... 98
III 3.3.3 Current Service Utilisation Patterns and Outcomes ...... 109
3.4 Healthcare Provision in Australia ...... 112
3.5 Equity in Health ...... 114
3.5.1 Availability ...... 114
3.5.2 Accessibility ...... 118
3.5.3 Consistent Quality ...... 119
3.5.4 Inequity in Health ...... 119
3.6 Rural Health ...... 120
3.6.1 TBI Service Provision in Rural Areas ...... 121
3.6.2 TBI Service Provision in Australia ...... 124
3.7 Funding Models ...... 129
3.7.1 Public Funding ...... 129
3.7.2 Private or Compensable Funding ...... 130
3.8 Summary ...... 132
3.9 Directions for Research ...... 136
CHAPTER 4 ...... 138
METHODOLOGY ...... 138
4.1 Introduction ...... 138
4.2 Research Paradigm ...... 139
4.2.1 Mixed Methods ...... 140
4.3 Research Approach ...... 141
4.3.1 Triangulation Approach ...... 143
4.4 Study Design ...... 145
4.4.1 Stage 1: Two Questionnaires ...... 145
4.4.2 Stage 2: Interviews ...... 150
4.5 Ethical Considerations ...... 156
IV 4.5.1 Potential Burden and Risks Experienced by Participants ...... 156
4.5.2 Informed Consent and Confidentiality ...... 159
4.6 Participation Selection and Recruitment ...... 161
4.7 Data Analysis ...... 164
4.7.1 Stage 1: Two questionnaires ...... 164
4.7.2 Stage 2: Interviews ...... 165
4.8 Ensuring Scientific Rigour ...... 173
4.8.1 Rigour in Stage One ...... 174
4.8.2 Rigour in Stage Two ...... 179
4.9 Reading the Results Chapters of This Thesis ...... 183
4.10 Conclusion ...... 185
CHAPTER 5 ...... 186
STAGE 1: REPORTED CONTINUUM OF CARE EXPERIENCED BY PARTICIPANTS WITH TBI ...... 186
5.1 Introduction ...... 186
5.2 Method ...... 187
5.3 Results ...... 188
5.3.1 Demographics of Participants with TBI ...... 188
5.3.2 What Is the Reported Continuum of Care Experienced by Adults with TBI?...... 194
5.3.3 What Is the Recollected Impact of Location on the Continuum of Care Experienced by Adults with TBI in Victoria? ...... 227
5.3.4 What Is the Impact of Healthcare Funding on the Continuum of Care Reported by Adults with TBI in Victoria? ...... 234
5.3.5 What Other Reported Factors Influence the Continuum of Care Reported by Adults with TBI in Victoria? ...... 239
5.4 Discussion ...... 243
5.5 Conclusion ...... 246
CHAPTER 6 ...... 248 V STAGE 1: REPORTED CONTINUUM OF CARE EXPERIENCED BY THE SIGNIFICANT OTHERS OF PEOPLE WITH TBI ...... 248
6.1 Introduction ...... 248
6.2 Method ...... 249
6.3 Results ...... 250
6.3.1 Demographics of Significant Others ...... 250
6.3.2 What Is the Reported Continuum of Care Observed and Experienced by the Significant Others of Adults with TBI? ...... 256
6.3.3 What Is the Impact of Location on the Continuum of Care Observed by Significant Others’ of Adults with TBI? ...... 280
6.3.4 What Other Reported Factors Influence the Continuum of Care Recollected by the Significant Others of Adults with TBI? ...... 287
6.4 Discussion ...... 290
6.5 Conclusion ...... 292
CHAPTER 7 ...... 294
STAGE 1: COMPARISON OF THE CONTINUUM OF CARE RECOLLECTED BY PARTICIPANTS WITH TBI AND THEIR SIGNIFICANT OTHERS ...... 294
7.1 Introduction ...... 294
7.2 Method ...... 296
7.2.3 Example of Data Analysis ...... 298
7.3 Results ...... 298
7.3.1 Demographics of Participant Pairs ...... 298
7.3.2 Do Adults with TBI and Their Significant Others’ Provide the Same Recollections About Services When Reflecting on the Care the Person with TBI Received Following Head Injury? ...... 304
7.4 Discussion ...... 308
7.5 Conclusion ...... 310
CHAPTER 8 ...... 311
VI STAGE 2: THEMES ARISING FROM INTERVIEWS EXPLORING PARTICIPANTS’ EXPERIENCES OF THEIR HEALTHCARE JOURNEY311
8.1 Introduction ...... 311
8.2 Method ...... 312
8.3 Results ...... 313
8.3.1 Demographics of Participants ...... 313
8.3.2 Theme 1: Acceptance and readiness ...... 319
8.3.3 Theme 2: Support ...... 335
8.3.4 Theme 3: Advocacy ...... 345
8.3.5 Theme 4: Right service at the right time ...... 353
8.3.6 Theme 5: Mismatched Expectations ...... 360
8.4 Conclusion ...... 375
CHAPTER 9 ...... 376
STAGE 2: INTERACTION OF THEMES ACROSS TIME ...... 376
9.1 Introduction ...... 376
9.2 Model of Stages of Rehabilitation ...... 377
9.3 Method ...... 379
9.3.1 Participants ...... 380
9.4 Exemplar Stories ...... 383
9.4.1 Bettina’s journey ...... 383
9.4.2 Melinda’s Journey ...... 389
9.4.3 Oscar’s Journey ...... 394
9.4.4 Daniel’s Journey...... 399
9.5 Discussion ...... 403
9.6 Conclusion ...... 409
CHAPTER 10 ...... 410
METASYNTHESIS OF RESULTS AND CONCLUSIONS ...... 410
VII 10.1 Introduction ...... 410
10.2 Metasynthesis of the Two Stages of the Study ...... 410
10.2.1 What Is the Reported Continuum of Care Experienced by Adults with TBI and Their Significant Others? ...... 412
10.2.2 Does Hometown Location Influence the Continuum of Care Experienced by Adults with TBI and Their Significant Others? ...... 420
10.2.3 Does the Funding Allocated to Pay for the Healthcare of Adults With TBI Impact on Their Experience of Continuum of Care? ...... 423
10.2.4 What Other Factors Influence the Continuum of Care Experienced by Adults with TBI and Their Significant Others? ...... 424
10.3 Model for Planning TBI Service Provision Through Continuum of Care Stages428
10.4 Research and Clinical Implications ...... 430
10.5 Conclusion ...... 431
CHAPTER 11 ...... 433
CONCLUSION ...... 433
11.1 Unique Features of the Study ...... 433
11.2 Unique Contributions of the Study ...... 435
11.3 Limitations of the Study ...... 436
11.3.1 Number of Respondents and Response Rate ...... 437
11.3.2 Characteristics of the Adults with TBI Who Took Part in the Study437
11.3.3 Findings Based on Perceptions ...... 439
11.3.4 Remoteness Index ...... 441
11.4 Directions for future research...... 442
11.5 Concluding remarks ...... 443
REFERENCES ...... 446
APPENDICES ...... 463
Appendix A: Tools Used in TBI Outcome Studies ...... 463
Appendix B: Survey One - Investigating your experiences of healthcare: A survey for people who have a traumatic brain injury...... 465 VIII Appendix C: Survey two - Investigating your experiences of healthcare: A survey for family members or significant others of a person with a traumatic brain injury...... 466
Appendix D: Information sheet ...... 467
Appendix E: Follow-up information sheet ...... 470
Appendix F: Interview topic guide ...... 472
Appendix G: Information sheet and consent form ...... 473
Appendix H: NVivo codes for questionnaire data ...... 476
Appendix I: Coding of participant transcripts ...... 480
Appendix J: Stage two participant validation ...... 482
Appendix K: Other data from both questionnaires ...... 484
Appendix L: Background information and healthcare stories ...... 496
IX LIST OF TABLES
TABLE 2.1: Risk Factors Associated with TBI
TABLE 2.2: Common Sequelae of Moderate to Severe TBI
TABLE 2.3: Prognostic Indicators for Recovering From TBI
TABLE 3.1: Description of Clinical Care Guidelines for Adults With TBI
TABLE 3.2: Changing Demands of Australian Healthcare
TABLE 3.3: Inequities Affecting Australian TBI Service Provision
TABLE 4.1: Strengths of Using a Mixed Methods Approach in This Study
TABLE 4.2: Weaknesses of the Convergence Model in Triangulation
TABLE 4.3: Weaknesses of Questionnaires as a Research Tool and Strategies Used to Minimise These
TABLE 4.4: Characteristics of Participants Included in Stage 2
TABLE 5.1: Demographics for Participants with TBI
TABLE 5.2: TBI Onset Information Reported by Participants with TBI
TABLE 5.3: Recollections of Adults with TBI Regarding Access to Each Stage of the Continuum of Care
TABLE 5.4: Rehabilitation Pathways Recollected by Adults with TBI
TABLE 5.5: Access to Specialist Services as Recollected by Adults with TBI
TABLE 5.6: Setting Where Participants with TBI Reported Receiving Outpatient Rehabilitation Services
TABLE 5.7: Degree of Happiness of Adults with TBI with Care Provided
TABLE 5.8: Reasons Given for Degree of Happiness with Services
TABLE 5.9: Improvements Proposed by Participants with TBI for Acute and Inpatient Rehabilitation Settings
TABLE 5.10: Reported Reasons for Lack of Access to Rehabilitation Services
X TABLE 5.11: Length of Stay in Hospital Based Stages as Reported by Participants with TBI
TABLE 5.12: Services Accessed at Each Stage of the Continuum of Care by Participants with TBI
TABLE 5.13: Frequency of Medical Services Accessed by Participants with TBI in Rehabilitation Settings
TABLE 5.14: Types of Medical Services Adults with TBI Reported Accessed as an Outpatient
TABLE 5.15: Frequency of Access by Participants in Rehabilitation to Allied Health Services
TABLE 5.16: Mental Health Services Accessed by Participants with TBI in Rehabilitation
TABLE 5.17: Changes Desired in Rehabilitative Services
TABLE 5.18: Attendance of Participants with TBI in Their Progress Meetings in the Inpatient Rehabilitation Setting
TABLE 5.19: Involvement of Participants with TBI in Goal Setting Throughout Rehabilitation
TABLE 5.20: Reported Reasons for Discharge From Inpatient Rehabilitation
TABLE 5.21: Need for Participants with TBI to Transfer From Inpatient Rehabilitation to Acute Care for Medical Reviews
TABLE 5.22: Participants’ Discharge Destination and Readiness for Discharge
TABLE 5.23: Participants’ Involvement in Planning for Discharge From Inpatient Rehabilitation
TABLE 5.24: Reported Feelings Experienced by Participants with TBI on Discharge
TABLE 5.25: Reasons for Reported Feelings Experienced by Participants With TBI on Discharge
TABLE 5.26: Leisure Activities in Which Participants with TBI Engaged in
TABLE 5.27: Engagement in Leisure Activities and Feelings of Being Supported as Reported by Participants with TBI
TABLE 5.28: Sources of Support Reported by Participants with TBI
XI TABLE 5.29: Degree of Remoteness of Home Towns and Services Accessed by Participants
TABLE 5.30: Need to Travel to Another Town to Access Outpatient Services
TABLE 5.31: Distance Adults with TBI Were Required to Travel to Access Outpatient Rehabilitation Service
TABLE 5.32: Mode of Transport Used by Adults with TBI to Travel to Outpatient Rehabilitation Services
TABLE 5.33: Funding Models Participants with TBI Reported Their Health Services Accessed to Fund Their Care
TABLE 5.34: Relationship Between Cause of TBI and Funding Allocated
TABLE 5.35: Funding Allocation by Reported Acute Length of Stay
TABLE 5.36: Funding Allocation by Reported Rehabilitation Services Received
TABLE 5.37: Funding Allocation by Reported Case Management Services Received
TABLE 5.38: Factors Cited by Participants With TBI which Influenced their Continuum of Care
TABLE 5.39: Factors mentioned by participants with TBI which appeared to impact upon their continuum of care
TABLE 6.1: Demographics of Significant Others
TABLE 6.2: Changes in Significant Other Demographics
TABLE 6.3: Significant Others’ Recollections of Access to Stages of Continuum of Care
TABLE 6.4: Significant Others’ Recollections of Access to Specialist Neuro-rehabilitation
TABLE 6.5: Significant Others’ Degree of Happiness with Level of Care Provided
TABLE 6.6: Reasons Given by Significant Others for Happiness with Services
TABLE 6.7: Significant Other’s Abilities to Visit People with TBI Throughout Their Healthcare Journey
TABLE 6.8: Significant Others’ Length of Visits with People with TBI in Acute and Inpatient Rehabilitation Settings
XII TABLE 6.9: Significant Others’ Recall of Adequacy of Information
TABLE 6.10: Significant Others’ Access to Carer’s Allowance
TABLE 6.11: Significant Others’ Access to Accommodation and Travel Support During the Acute Phase
TABLE 6.12: Significant Others’ Access to Accommodation and Travel Support During TBI Participant’s Inpatient Rehabilitation Stay
TABLE 6.13: Significant Other’s Access to Carer Support Services
TABLE 6.14: Significant Other’s Involvement in Guiding Care in Inpatient Rehabilitation
TABLE 6.15: Significant Other’s Experiences of Participant’s Discharge Timing
TABLE 6.16: Significant Others’ Training to Care for Participant with TBI Upon Discharge From Rehabilitation
TABLE 6.17: Significant Others’ Support on Participant’s Discharge
TABLE 6.18: Significant Others’ Feelings of Anxiety on Participant’s Discharge
TABLE 6.19: Reasons for Significant Others’ Level of Anxiety on Discharge
TABLE 6.20: Significant Others’ Perceived Ability to Access Respite Care for People with TBI
TABLE 6.21: Degree of Remoteness of TBI Services Accessed as Reported by Significant Others
TABLE 6.22: Significant Others’ Need to Move as a Result of Participant’s TBI
TABLE 6.23: Significant Others’ Travel to Visit Participant with TBI
TABLE 6.24: Significant Others’ Length of Time of Relocation in Acute Stage
TABLE 6.25: Factors Identified by Significant Others as Influencing the Continuum of Care Received by Participant with TBI
TABLE 7.1: Corresponding Questions on Questionnaires
TABLE 7.2: Comparison of Onset Information Recollected by Participants With TBI in Whole Group Versus Participant Pairs
TABLE 7.3: Comparison of Demographics of Participants with TBI in Whole Group Versus Participant Pairs
XIII TABLE 7.4: Comparison of Demographics of Significant Others in Whole Group Versus Participant Pairs
TABLE 7.5: Comparison of Recollected Experience Between Participants with TBI and Their Significant Others
TABLE 7.6: Degree of Agreement on Some Questions Requiring Personal Judgement
TABLE 7.7: Degree of Agreement on Happiness by Stage of Care
TABLE 8.1: Demographic Details of the Sixteen Interviews
TABLE 8.2: Overview of Themes Identified from Interviewees
TABLE 9.1: Review of Participants Discussed in Chapter 9
TABLE 10.1: Research Questions Answered According to Chapter Presentation
TABLE 10.2: Clinical Implications of This Study
XIV LIST OF FIGURES
FIGURE 3.1: Model of Stages of Rehabilitation for Adults with TBI
FIGURE 3.2: Foster, Tilse and Fleming’s (2004) Model for Understanding Health Professionals’ Processes of Referral
FIGURE 4.1: Example of Coding Process From Level one Code to Final Theme
FIGURE 7.1: Example of Point by Point Comparison
FIGURE 9.1: Model of Stages of Rehabilitation
FIGURE 9.2: Model of Stages of Rehabilitation with Personal Factors Intertwined
FIGURE 9.3: Bettina’s Ability to Access Services
FIGURE 9.4: Melinda’s Ability to Access Services
FIGURE 9.5: Oscar’s Ability to Access Services
FIGURE 9.6: Daniel’s Ability to Access Services
FIGURE 9.7: Factors Which Health Professionals Need to Consider Before Service Referrals Are Made for Adults with TBI Adapted from Foster and Tilse 2003
FIGURE 10.1: Model for Planning TBI Service Provision Through Continuum of Care Stages
XV ABBREVIATIONS
ABI Acquired brain injury
AIS Abbreviated Injury Score
ARIA Accessibility Remoteness Index of Australia
ADL Activities of daily living
AIHW Australian Institute of Health and Welfare
BIRP Brain injury rehabilitation program
BRSM British Society of Rehabilitation Medicine
CI Community integration
CIQ Community Integration Questionnaire
CT Computerised tomography
DAI Diffuse axonal injury
DRS Disability Rating Scale
EBIC European Brain Injury Consortium
FIM Functional Independence Measure
GAS Goal Attainment Scale
GCS Glasgow Coma Scale
GOAT Galveston Orientation Amnesia Test
GOS Glasgow Outcome Scale
GP General practitioner
HBA Hospital Benefits Association
HDV Health Department Victoria
LOC Loss of consciousness
MPAI-22 Mayo-Portland Adaptability Inventory
NSW New South Wales XVI OECD Organisation for Economic Co-operation and Development
PP Participant pairs
PTA Post Traumatic Institute
PWTBI Participants with traumatic brain injury
RCP Royal College of Physicians
RCT Randomised controlled trial
RMH Royal Melbourne Hospital
SPSS Statistical Package for the Social Sciences
SWBIRS South West Brain Injury Rehabilitation Service
TAC Transport Accident Commission
TBI Traumatic brain injury
WG Whole group
WHO World Health Organization
XVII CERTIFICATE OF AUTHORSHIP
I, Anna O’Callaghan
Hereby declare that this submission is my own work and that, to the best of my knowledge and belief, it contains no material previously published or written by another person nor material which to a substantial extent has been accepted for the award of any other degree or diploma at Charles Sturt University or any other educational institution, expecpt where due acknolwedgement is made in the thesis. Any contribution made to the research by collegagues with whom I have worked at Charles Sturt University or elsewhere during my candidture is fully acknowledged.
I agree that this thesis be accessible for the purpose of study and research in accordance with the normal conditions established by the University Librarian for the care, loan or reproduction of theses.
______
Signature Date
XVIII ACKNOWLEDGEMENTS
Many people have influenced and supported this research. I would like to acknowledge my supervisors, Associate Professor Lindy McAllister and Dr. Linda Wilson of the Speech Pathology Department at Charles Sturt University and the University of
Queensland. Lindy and Linda have given me a great deal of their time and enthusiasm, and have generously shared their knowledge of research. My research was supported in part through an Australian Postgraduate Award, a Speech Pathology Australia Postgraduate
Scholarship and the Australian Rural and Remote Health Professional Scholarship Scheme.
I am grateful to those who provided encouragement and support at various times during this research: Jane McCormack, Lucie Shanahan, Dr. Leah Wiseman, Belinda
Walker and Rachel McGrath. I would also like to thank all the people with TBI and their family members who agreed to talk to me and share their experiences. Their surveys and interviews were wonderful sources of information and I have enjoyed the opportunity to read, listen and learn from them. I am also indebted to the many people with TBI and the staff working with them who I met in the course of my clinical career. I developed many of my questions and ideas from initially hearing your stories.
Finally, I wish to thank my family and friends. My father, sisters and brother have provided me with emotional support and encouragement by telephone and e-mail from
Melbourne, Darwin and Perth. My friends have provided me with many much needed coffee breaks and have provided a refreshing distraction from this research. Most significantly, my mother, Zoe, has been invaluable throughout, providing me with meals, honest criticism and unwavering support.
XIX FINANCIAL SUPPORT FOR THIS RESEARCH
I acknowledge the following financial supports for this research and thank the organisations associated with this sponsorship:
Australian Postgraduate Award (approx. $20,000 per annum) (2008-2009),
Speech Pathology Australia Postgraduate Research Grant ($1,500) (2008), and
Australian Rural and Remote Health Professionals Scholarship Scheme ($4,950)
(2008).
Paid editorial assistance
I would also like to acknowledge and thank Joan Rosenthal, for proof-reading this thesis and providing advice on matters of formatting, grammar and style.
XX ETHICS APPROVAL
This study was conducted with the approval of the Charles Sturt University Ethics in Human Research Committee (protocol: 2007/071). As the study was conducted with the help of Melbourne and Bayside Health facilities it was also approved by the Royal
Melbourne Hospital Human Research Ethics Committee (protocol: 2007.175) and the
Alfred Hospitals Research and Ethics Unit (approval number: 170/07).
XXI PUBLICATIONS AND PRESENTATIONS ARISING FROM THIS DISSERTATION
Journal articles
O’Callaghan, A. M., McAllister, L., & Wilson, L. (In press). Experiences of care reported by adults with traumatic brain injury in Australia. International Journal of Speech
Language Pathology.
O’Callaghan, A. M., McAllister, L., & Wilson, L. (2009). Sixteen years on has quality of care for rural and non-compensable traumatic brain injury clients improved?
Australian Journal of Rural Health, 17 (3), 119-123.
Conference presentations
O’Callaghan, A. M., McAllister, L., & Wilson, L. (2009). Factors affecting access to care: Perceptions of TBI healthcare consumers. Paper presented at the Speech Pathology
Australia Conference, Adelaide, May 2009.
O’Callaghan, A. M., McAllister, L., & Wilson, L. (2008). Reflecting on the connection between best practice guidelines and current rehabilitation patterns following
TBI in adults. Paper presented at the joint New Zealand Speech-Language Therapists'
Association and the Speech Pathology Australia Conference, Auckland, May 2008.
O’Callaghan, A. M., McAllister, L., & Wilson, L. (2007). Traumatic brain injury, continuum of care and rural health: A literature review. Paper presented at the Speech
Pathology Australia National Conference, Sydney, May 2007.
XXII ABSTRACT
In recent years there has been a move towards the application of clinical care guidelines founded on evidence-based best practice in the provision of health services.
Health services, departments and clinicians have been encouraged to use guidelines to formulate service-specific protocols, clinical pathways and care plans which help ensure efficient and effective service provision. The availability and implementation of these guidelines has been shown to lead to significant improvements in the processes as well as the outcomes of care (Bulger et al., 2002; Fakhry, Trask, Waller, & Watts, 2004; Faul,
Wald, Rutland-Brown, Sullivent, & Sattin, 2007; Spain et al., 1998).
Clinical care guidelines outlining evidence-based treatments in acute care following traumatic brain injury (TBI) are numerous (Brain Trauma Foundation, 2003, 2005, 2006,
2007, 2008a; Maas et al., 1997; National Institute for Clinical Excellence, 2007).
International TBI rehabilitation guidelines are also available (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006; Turner-Stokes, Disler, Nair, & Wade, 2005). However Australian guidelines targeting long-term TBI rehabilitation are non-existent. In addition, there has been limited research into current trends in TBI service provision in Australia.
It is the aim of this study to compare “international best practice” as described in
TBI rehabilitative guidelines with reported current practice in Australia. In this way, gaps in best practice can be identified and steps can be taken to improve service provision. It is hoped that this research will help inform the development of Australian specific TBI rehabilitation clinical care guidelines.
This two stage mixed methods study investigated the continuum of care experienced by adults with moderate to severe TBI and their significant others. In Stage 1, the reported experiences of 202 adults with TBI and 184 significant others were surveyed via a XXIII Victorian state-wide questionnaire. In Stage 2, 14 adults with moderate-severe TBI and 9 significant others were interviewed. The findings from these two stages were synthesised.
The results indicated that very few of those surveyed reported receiving health services in line with international clinical care guidelines. Participants reported significant gaps in service provision, including lack of specialist services, limited involvement in guiding their care, poor monitoring following discharge from formal services, limited involvement in transition planning, variations in access to care according to funding, and poor access to support upon community integration after discharge from formal services.
Nevertheless, interestingly, those with TBI and their significant others were largely satisfied with the services received.
In the interviews completed with adults with TBI and their significant others several themes were identified which described influences on people’s ability to access services over time. These themes included: (a) their acceptance of head injury and readiness to engage in therapy, (b) their ability to access constant support, (c) their and others’ roles in advocating for services, (d) their ability to access the right service at the right time, and (e) the degree of match between their and others’ expectations with regard to services provided, treatments recommended, staff specialty and expected outcome.
Both the adults with TBI and their significant others acknowledged the significant physical, emotional, behavioural and cognitive changes they experienced as a result of their head injury. They also spoke about the impact of these changes on their quality of life.
Given their impairments, participants stressed the importance of being able to access timely, coordinated, specialist rehabilitative services to maximise their ability to cope and re-integrate into the community following discharge from hospital.
Consequently, a model to guide service provision is proposed, demonstrating the fluidity and integration of client access related factors across time to help ensure the XX IV judicious provision of rehabilitative services to adults following moderate to severe TBI.
This model adds to international best practice rehabilitative guidelines by considering timing and personal factors in the implementation of appropriate services. It is proposed that in order for adults with TBI to achieve the best possible outcomes following rehabilitation, services must be allocated appropriately without time limitations.
XXV AN INVESTIGATION OF THE CONTINUUM OF CARE AS EXPERIENCED BY
VICTORIAN ADULTS WITH MODERATE TO SEVERE TRAUMATIC BRAIN
INJURY AND THEIR SIGNIFICANT OTHERS.
CHAPTER 1
OVERVIEW OF THE THESIS
1.1 Introduction
There is no doubt that once adults sustain a moderate to severe traumatic brain injury (TBI), they require timely, acute care to limit the primary head injury and prevent secondary complications. This is often followed by ongoing rehabilitation to maximise functional return. Indeed, there are many published national and international clinical care guidelines which stipulate appropriate levels of service provision throughout the continuum of care of adults with TBI (e.g., Accident Rehabilitation and Compensation Insurance
Corporation & National Health Committee, 1998; British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; Turner-Stokes, Disler, Nair, & Wade,
2005; Youse, Le, Cannizzaro, & Coelho, 2002). The aim of these guidelines is to improve the quality of services provided by assisting health professionals to make decisions regarding treatment based on the best available research evidence (Frattali et al., 2003).
However, before being directed by clinical care guidelines, it is important for clinicians to be aware of the research evidence on which clinical guidelines are based. A common misconception exists amongst clinicians (Turkstra & Kennedy, 2008) that guidelines should be based purely on the results of randomised controlled trials (RCT).
However, according to Maas (2002), guidelines should also include consideration of high
27 quality clinical research, with or without randomisation, caregivers’ experiences and clients’ preferences.
Nevertheless, very few currently utilised clinical practice guidelines consider the preferences of consumers in their recommendations. In fact, Nelson (2007) went so far as to state that health professionals did not routinely recognise the potential for assessing consumers’ preferences. Consumers’ preferences and experiences along a continuum of participation in health and healthcare can act as a stimulus and roadmap for improvement in healthcare policy and delivery. Clinical practice guidelines are increasingly affecting the quality of healthcare and have the potential to affect the availability of healthcare options for consumers. Deciding what guidelines will cover, how they will be developed and what they will say is therefore an issue in which consumers have a considerable stake (Bastian,
1996).
Using a mixed methods approach, it is the aim of this thesis to investigate the experiences of adults with TBI and their significant others when accessing health services throughout their continuum of care. These experiences are then compared to international best practice as presented in TBI rehabilitation guidelines, to describe current trends in TBI service provision in Victoria, Australia.
To establish the rationale for seeking consumers’ preferences in service planning, this first chapter describes the influence of consumers on service provision. The importance of considering consumer preferences (in this case, the preferences of adults with TBI and their significant others) is then addressed. The major aims and scope of this research, including specific research questions, are then outlined. As my thesis is partially qualitative in nature, my motivations and beliefs in conducting this research are then described.
Finally, descriptions of the thesis chapters are presented.
28 1.2 Influence of Consumers on Service Provision
As stated earlier, the implementation of clinical care guidelines helps to standardise service delivery, ensuring the development of equitable and efficient TBI services through the implementation of best practice. Although the importance of providing services is noted, it is imperative to recognise that the provision of a health service does not guarantee that those who need the service will use it (Humphreys & Mathews-Cowey, 1997). In order for a health service to be utilised, consumer preferences must be considered. Formal methods to incorporate consumer preferences in the development of clinical care guidelines have been limited in the past (Institute of Medicine, 1992). Systematic involvement of consumers in the development, dissemination and use of clinical care guidelines in the management of chronic conditions, such as TBI, continues to be slow to evolve (Rao,
Myers, Smith, & Andreou, 1995).
Advocacy and regulatory agencies (e.g., National Rural Health Policy Forum,
1999), along with researchers (Blight, 1991; Brown, 1991; Humphreys & Rolley, 1991,
1993; Keleher, 1999), have gradually acknowledged the vital role healthcare consumers play in the improvement of health services in Australia. The 1999-2003 ‘Healthy Horizons’ framework (National Rural Health Policy Forum, 1999) reflects this view. This framework provides direction for Commonwealth, State and Territory governments in developing strategies and allocating resources to improve the health of those living in underserved regions of Australia. It is based on the premise that health policies should be formulated in collaboration with community members and health professionals (National Rural Health
Policy Forum, 1999). This framework acknowledges the need for incorporation of consumer preferences in the formulation of efficient and effective health services.
Consumers’ preferences for and experiences of the delivery of health services have been explored in the literature (Humphreys, Mathews-Cowey, & Weinand, 1997; Rankin, 29 Newell, Sanson-Fisher, & Girgus, 2000). In this literature, consumers’ preferences relate to their ability to choose one type of service over another, whereas their experiences relate to their reflection on the services they received, and their satisfaction relates to their degree of contentment with the services provided.
Factors underpinning consumer preferences and experiences of medical services have been identified. They include availability (i.e., the existence of services in relation to consumers’ needs), accessibility (measured in terms of distance, time, cost and availability of transport), accommodation (i.e., how the service is organised to accept consumers, measured in ways such as waiting time), affordability (in terms of economic access to services) and acceptability (in terms of consumers’ attitudes towards a particular service or health professional) (Penchansky & William Thomas, 1981). Consumers’ preferences for, experiences of, and satisfaction with the delivery of TBI services are, however, largely unknown. No national and few international studies have been completed to date reflecting the experiences of, satisfaction with and preferences for the receipt of services from the perspective of adults with TBI and their families (LeFebvre, Pelchat, Swaine, Gelinas, &
Levert, 2005; Muus, Cogan, Offutt, & Medalen, 2006; New Zealand Guidelines Group &
Accident Compensation Corporation, 2004).
Canadian researchers LeFebvre et al. (2005) used semi-structured interviews to investigate the experiences of eight individuals who had sustained a TBI, their families and the physicians and health professionals involved in their care. This study reviewed the experiences of consumers from the acute care management through to their subsequent rehabilitation. LeFebvre et al. (2005) found that the majority of participants were satisfied with the availability of services during the acute care phase. However, this situation differed once the people with TBI and their families returned home. Adults with TBI and their families criticised the lack of resources available to them after discharge from 30 residential care. They voiced their belief that the lack of human resources available resulted in exhaustion among professionals which compromised the quality of care for them as recipients of TBI services. The opinions of physicians and health professionals mirrored patients’ and families’ comments in this study.
The findings of Muus et al. (2006) were consistent with those of LeFebvre et al.
Muus et al. surveyed 117 North Dakotans with TBI to identify the major barriers to access to health and social services from the perspectives of healthcare consumers. They found that the commonly cited barriers to access and service utilisation were shortage of TBI advocates, inadequate knowledge of available services, no centralised source of information, inadequate financial resources and lack of individualisation of TBI programs.
Although they stated that the majority of barriers experienced were due to poor advocacy efforts and a lack of information, they also reported that many of the cited barriers could be lessened or alleviated through increased effort at the state level to address the needs of people with TBI.
Another survey of TBI consumers’ preferences for, experiences of and satisfaction with services was conducted by the Medical Research Institute of New Zealand (2004). The aim of this and a second survey of TBI service providers was to allow comparison of international best practice as described in TBI guidelines with TBI service provision in
New Zealand. The responses of 420 adults with TBI (response rate of 21%) were analysed as part of the New Zealand study. The results indicated that a large number of consumers
(40%) were not satisfied with the services that were provided. Gaps identified in service provision included:
• a perceived lack of knowledge of TBI among service providers which
affected the way adults with TBI were treated,
31 • difficulty finding available services, which were often self-sourced rather
than offered or suggested by service providers,
• fragmented and/or poorly coordinated services,
• poor access to services, which appeared to be compounded by degree of
rurality,
• preference for perceived specialist services even if required to travel,
• variable case manager services with high staff turn over, and
• perception that the New Zealand health system was geared toward the
resolution of physical injuries, not remediation of cognitive, emotional or
lasting impairments commonly experienced by those with TBI
(McNaughton, 2004).
These three studies, while offering important initial research which assists in the evaluation of TBI consumers’ care from their perspectives and the perspectives of their families, are all internationally based (i.e., Canada, the US and New Zealand). Moreover, most of the participants had sustained their TBI up to 12 years before being surveyed or interviewed (although the publication of the studies was more recent). The experiences of care reflected upon occurred up to 17 years ago. Therefore, those experiences might not reflect the current reality of service provision in the countries concerned.
1.3 Importance of Considering Consumer Preferences
Awareness of the preferences of TBI service consumers is not only essential for establishing the “reality” of service provision; it is also essential in planning TBI services
(i.e., identifying service needs) and in service evaluation (i.e., conducting quality assessments, ensuring quality assurance and undergoing service accreditation). For example, Gervais and Dube (1999) investigated consumer preferences in an exploratory
32 study of TBI service needs in Montreal, Quebec, in order to reconcile the disparity between consumers’ needs and the services provided. They interviewed 196 adults with TBI and their family members and determined that TBI services in Montreal needed to provide consumers with more information about head injury, better vocational and educational reintegration services, better family support, better treatment for psychological-, pain- or fatigue-related impairments, as well as more resources once people with TBI returned home.
Another study completed by Swaine, Dutil, Demers and Gervais (2003) followed on from Gervais and Dube’s exploration of service needs to devise a tool which would measure consumers’ levels of satisfaction with TBI services as a quality assessment and assurance indicator. They developed a questionnaire following a comprehensive literature review and expert and consumer consultation. The aim of the questionnaire was to evaluate
TBI consumers’ satisfaction with services, according to the services’:
• ecological approach (e.g., that the service targeted consumers’ real life
activities),
• client centred approach (i.e., that the service targeted consumers’ needs and
that consumers had power to decide upon actions that concerned them),
• accessibility (i.e., that services could be obtained if needed),
• quality of service provider (i.e., that service providers were competent and
collaboration occurred between team members), and
• continuity (i.e., that the pathways of care were flexible, coordinated and
adapted according to consumers’ evolution and environmental realities)
(Swaine, Dutil, Demers, & Gervais, 2003).
33 The results of the use of this questionnaire in TBI service evaluation are yet to be known. However, the authors considered that TBI rehabilitation programs could be evaluated using the questionnaire to identify what worked from the consumers’ perspective and how programs could be modified to better meet the needs of adults with TBI.
The two studies reviewed above demonstrate how consumer preferences can be considered in service planning and evaluation. Both these studies are Canadian. No
Australian study of consumer preferences with regard to TBI service planning, utilisation or evaluation has been published to date. Further research is required in the area of consumer preferences to determine whether Australian adults with TBI and their families receive services in line with clinical care guidelines and whether access to services changes according to a person’s degree of rurality. Furthermore, adults with TBI and their families should be given the opportunity to express satisfaction or dissatisfaction with the services they receive, offering their perceptions of barriers to access, which could be removed once known.
Implementing improvements in healthcare based on consumers’ needs and preferences requires concentrated effort by researchers, healthcare professionals and policy makers to engage consumers as vital participants in healthcare delivery rather than making them passive recipients of information. Engagement of consumers in this way is beneficial, as indicated by the growing literature which demonstrates that consumer involvement in care is associated with enhanced health outcomes (Ergh, Rapport, Coleman, & Hanks,
2002; Kaplan, Greenfield, & Ware, 1989).
The views of Australian adults with TBI, their families, and the communities within which they live are paramount in the evaluation and allocation of appropriate services. The more research that is completed in this area, the greater the fit will be between the needs of people with TBI and the services that are provided. Once these needs and services are 34 matched, a more equitable health service may emerge. It is hoped that the proposed research will help inform this process. The construct of equity is further discussed in
Chapter 3.
1.4 Motivation for Completing This Study and Position of Researcher
As a practising speech pathologist, I provided rehabilitation services to adults following traumatic brain injury for 3 years before commencing PhD studies. I was employed consecutively in a regional public hospital and at a private metropolitan specialist
TBI hospital while working in the area of traumatic brain injury. During this time, I noticed that variations in the types of care provided appeared to be dependent on the services available in a client’s home town (i.e., a metropolitan centre vs. rural area) or the healthcare funding (i.e., compensable vs. public vs. private) allocated to clients at the time of their
TBI.
When I worked within a public regional health service, I witnessed public and private clients being discharged within specified time periods. The length of stay of these clients in health services appeared to be dictated by funding arrangements, largely irrespective of goal achievement. However, compensable clients with allocated funding appeared able to stay, maximising therapy opportunities and possible goal attainment. It seemed that client discharge options were also notably improved if clients were allocated compensable funding. Compensable clients often had the option of being placed in specialised transitional living centres (i.e., “Healthscope houses”, disability housing catering for the needs of those with severe TBI), whereas public clients with limited funds had fewer options. Many public clients were discharged to hostel level accommodation or home, with family playing the role of primary carers, without the adaptive aids they
35 needed. Two years ago, when I was still a practising clinician, the waiting list for adaptive aids funded by the Victorian aids and equipment program was 12 months.
At the same time, I noticed clinicians being increasingly encouraged by managers to participate in care planning activities, follow care protocols, and manage stipulated inpatient length of stay targets. The targets were based on estimated discharge dates generated by a person’s initial Functional Independence Measure (FIM) score (see description in Appendix A). The protocols, care plans and length of stay targets appeared to be based on literal interpretations from newly published international clinical care guidelines.
An example of this literal interpretation related to the ability of clients to access cognitive rehabilitation. Many insurance companies would not cover the costs of cognitive rehabilitation as stipulated in clinical care guidelines (because of the poor level of evidence available) (Turkstra & Kennedy, 2008). Therefore, if clients were unable to receive cognitive rehabilitation services through the public health system they were required either to pay privately to access the service or to go without.
Upon undertaking this research I wondered how many adults with TBI actually received the services outlined in clinical care guidelines. I also wondered whether clients actively chose these services or whether my perception that clients’ access to these services depended on where they lived and the funding allocated to them at the time of their injury was correct. I was particularly interested in the perspectives of adults with TBI and their families. Having had first-hand experience as a family member of an adult with a moderate to severe TBI, I understood the struggle families experience when attempting to come to terms with the “new person”. I recollected the initial relief that was felt following the family member’s survival, soon to give way to resentment as long-lasting behavioural
36 problems, difficulties with accommodation, problems with funding, limited access to ongoing therapy, and concurrent substance abuse, took their toll.
Given this background, I was interested in understanding the experiences of adults with TBI and their significant others when navigating their continuum of care following
TBI. I was interested to explore whether their experiences aligned with recommendations made in clinical care guidelines and whether variations in reported care were dependent on rurality and funding. Furthermore, I aimed to identify the barriers of access to services adults with TBI face.
1.5 Aims and Scope of This Study
This study used two research stages to investigate the continuum of care experienced by adults with TBI and their significant others in Victoria. The aim was to achieve depth of understanding of their experiences from both a quantitative perspective
(i.e., how many people accessed which stage of care, received which services, and for how long) and a qualitative perspective (i.e., how participants felt when accessing services, what barriers they experienced, what they needed, what motivated them to continue). The following specific research questions were posed for this research with Victorian adults with TBI and their significant others:
1. What is the reported continuum of care experienced by adults with TBI?
2. What is the recollected impact of hometown location on the continuum of care
experienced by adults with TBI?
3. What is the recollected impact of healthcare funding on the continuum of care
experienced by adults with TBI?
4. What is the reported continuum of care recollected by significant others of
adults with TBI? 37 5. What is the recollected impact of hometown location on the continuum of care
experienced by the significant others of people with TBI?
6. What are other reported factors that influence the continuum of care experienced
by adults with TBI and their significant others?
7. Do people with TBI and their significant others recollect receiving the same
services when reflecting on the care they received following head injury?
8. What factors affected the ability of people with TBI and their significant others
to access services following head injury?
Victoria was chosen as the state for this research as it is one of the smallest geographical states in Australia. Therefore, findings relating to difficulties in access according to geographical isolation (research Questions 2 and 5) could be easily generalised to other larger states and territories. TBI services are also the most well established in
Victoria, with two specialised acute neurotrauma centres, two private specialist rehabilitation programs, and multiple specialised public rehabilitation services located throughout both metropolitan and large regional centres. If international guidelines were to be implemented in TBI care in Australia, they would likely be implemented in a state where existing hospital infrastructure was available. Victoria also has a healthcare funding model with which, from clinical experience, I was familiar. Victorian funding includes a mixture of Commonwealth and State funds (i.e., public), private insurance (i.e., health insurance), and third party funding (i.e., compensable funding such as that provided by the Transport
Accident Commission (TAC) or Work Cover). Funding for healthcare services is further discussed in Chapter 3, Section 3.7.
38 1.6 Map of Thesis
In Chapters 2 and 3, literature pertaining to the personal impact of TBI, TBI rehabilitation, clinical care guidelines and issues of access and equity are reviewed. Chapter
2 defines TBI, its pathophysiology, epidemiology, implications linked to severity, and its likely prognosis. The chapter then describes the personal impact of TBI on family members, including carer needs, their burden, and strategies for effective coping. Chapter 3 summarises and critiques the literature regarding TBI rehabilitation, clinical care guidelines, and current national and international practices in TBI service provision, also considering issues of equity, access, rurality and funding. This review of the literature identifies the presence of several gaps in the research and the corresponding need for this study.
Chapter 4 presents the methodology of this study, including the research paradigm and approach, issues of participant selection and recruitment, design of the two stages of the study, data analysis procedures, and discussion of the ethics and trustworthiness of the research. Chapters 5, 6, 7 and 8 report the results of the two stages of the study: the participants’ surveys and interviews. In Chapter 9, a model representation depicting participants’ readiness to access services throughout the context of time is presented. It is proposed that this model will add value to clinical care guidelines used by healthcare professionals in the consideration of appropriate service provision for adults following TBI.
Finally, in Chapters 10 and 11, the findings from the two stages of the study are synthesised, the clinical implications of the findings are discussed, and the limitations of the study are outlined. Future directions for research are suggested and the unique contributions of this study to the field of adult TBI service provision are highlighted.
39 CHAPTER 2
PERSONAL IMPACT OF TBI
2.1 Introduction
Few sicknesses, diseases or illnesses result in the overwhelming and devastating impairments that accompany a moderate to severe TBI. An individual who sustains this injury is often no longer the same person. They may think differently, move and behave differently. These differences, whether large or small, impact not only on the life of adults with TBI but also on their family and friends. The literature relating to these personal impacts of TBI is the focus of this chapter.
The first section of this chapter introduces the condition of TBI and its impact on the life of the person who sustains one. A definition of TBI is provided, followed by a discussion of its pathophysiology, review of its epidemiology, consideration of its risk factors, description of its severity, and discussion of indicators for favourable prognosis following TBI. This discussion is followed by consideration of the impact of TBI on family members. This section includes a definition of what it means to be a family carer, followed by a description of the different experiences felt by carers who are either parents or spouses. The needs of carers are then reviewed, followed by a discussion of carer burden and depression. Moderators of carer burden are proposed and strategies for supporting carers are discussed.
2.2 Traumatic Brain Injury
2.2.1 Definition of Traumatic Brain Injury
A traumatic brain injury is a form of brain injury encompassed under the term acquired brain injury (ABI). The term ABI, also known as head injury or acquired brain
40 damage, is used to refer to all types of brain damage which occur after birth. An ABI can be caused by brain damage as a result of an accident, stroke, alcohol or drug abuse, tumour, poisoning, infection or disease, haemorrhage, AIDS, and a number of other disorders such as Parkinson’s disease, multiple sclerosis and Alzheimer’s disease (Brain Injury
Association of Queensland, 2009).
A TBI is distinguished from other forms of ABI as it is caused by a sudden blow to the head by an external force, unlike other conditions with a gradual or degenerative onset.
A TBI also usually involves some loss of consciousness. The external force causing a TBI may be generated either by a moving object striking the head (e.g., a baseball bat hitting a persons head) or by a moving head that hits a stationary object (e.g., when a person’s head hits the car windshield in a road trauma) (Brookshire, 2003; Ponsford, Sloan, & Snow,
1995).
A TBI should not be confused with an intellectual disability. People with a TBI often have difficulty controlling, coordinating and communicating their thoughts but they do not suffer from an intellectual disability (Brain Injury Association of Queensland, 2009;
Silver, McAllister, & Yudofsky, 2005). The impairments a person acquires as the result of a
TBI are varied: no two people can expect to experience the same impairments or share the same outcomes. A TBI has the potential to alter a person’s physical, emotional and cognitive self. Even a mild TBI can seriously interfere with a person’s daily functioning.
Although ultimately the outcome of the injury depends on the nature and severity of the injury a person sustains, appropriate rehabilitation plays a vital role in determining the level of recovery a person will make (Brain Injury Association of Queensland, 2009).
41 2.2.2 Pathophysiology
Traumatic brain injuries are commonly caused by road trauma, falls, assaults, or during sport. A person’s brain injury may happen at the time of impact or later through haemorrhage, brain swelling, changes to cerebral blood flow or reduced oxygen levels
(Accident Rehabilitation and Compensation Insurance Corporation & National Health
Committee, 1998).The extent of damage caused by a brain injury depends largely on the type of primary injury and its secondary side effects. Primary injuries occur as a result of the initial impact to the head, which directly damages neuronal tissue, whereas secondary injuries are the result of normal pathophysiological responses to the primary injury (e.g., cerebral oedema, haemorrhage, infection and increased intracranial pressure) (Brookshire,
2003).
A primary head injury may be caused by two means: cerebral contusion or diffuse axonal injury (DAI). Cerebral contusions or bruising typically occur at the site of impact
(Ponsford et al., 1995). However, the frontal and temporal regions of the brain are the most common sites of brain surface bruising regardless of the site of impact (Ponsford et al.,
1995). The second cause of primary head injury, DAI, result from the acceleration of the brain following impact. The degree of DAI a person sustains is indicative of their quality of recovery as DAI cause shearing strain and neuronal tearing through deep portions of the brain (Ponsford et al., 1995).
Traumatic brain injuries can be divided into two primary mechanisms of injury: blunt or penetrating. A blunt trauma, otherwise known as a non-penetrating or closed brain injury, is the most common cause of TBI. In blunt trauma, a person’s skull remains closed, the meninges remain intact, and no foreign material enters the brain. The most common causes of blunt trauma are road traumas, bicycle crashes, falls, sporting injuries and assaults
(Brookshire, 2003; Nolan, 2005). 42 Penetrating head injuries are caused when an object penetrates a person’s scalp and skull, exposing and then entering the brain. The point of entry, depth, angle and force of entry all help to determine the extent of injury to the brain tissue. Most penetrating head injuries are caused by missiles (i.e., bullets, stones, artillery shell fragments) and are the most life threatening form of TBI. If a person survives the primary penetrating assault, secondary injuries such as infection, bleeding and intracranial pressure become important threats to survival (Brookshire, 2003).
2.2.3 Epidemiology
There is a high prevalence of TBI in the community, being ten times more common in Australia than spinal cord injuries (Khan, Baguley, & Cameron, 2003). The most recent
Australian epidemiological study of TBI was conducted in 2007 by the Australian Institute of Health and Welfare (AIHW). The AIHW (2007) found that the average rate of TBI in
2004-2005, across the eight states and territories of Australia, was 107 per 100,000 population. Of these, 63% were of working age (16-65 years), with the highest rate of TBI occurring in individuals aged 15-24 years (23%); males comprised more than two thirds
(69%) of this group. In fact, higher rates of TBI occurred in males of all age groups. A 15% increase in the TBI hospitalisation rate was also noted for people 45-64 years old in 2004-
2005 compared to 1999-2000 (Australian Institute of Health and Welfare, 2007).
Fortune and Wren (1999) and O’Connor (2002) found that the average rate of TBI in Australia in 1996-1997 was 149 per 100,000 of the population. This dropped to 141 new cases per 100,000 in 1997-98 (O'Connor, 2002). The decrease in incidence, although promising, needs to be considered in light of the fact that the figures are estimates, not reports of the true incidence of TBI in
43 Australia. Hospital classification and diagnostic errors, alongside varying definitions of TBI in research evaluating TBI epidemiology, and the under-reporting of mild TBI, mean that measures of TBI incidence are frequently underestimated (Comper, Bisschop, Carnide, &
Tricco, 2005; Fortune & Wren, 1999).
Nevertheless, clear trends of incidence can still be mapped. For example, TBI appears to peak in the 15-24 year age group, and is more common in young men. Male to female ratios have been reported to be as high as 5:1 (Annegers, Garbow, & Kurland,
1980). It is hypothesised that this gender difference is attributable to males being more likely to engage in risk-taking behaviour (Khan, Baguley, & Cameron, 2003).
Rural residents are also over-represented in the incidence figures. In a study by
Hiller, Hiller and Metzer (1997) in South Australia, it was found that 33% of TBI patients came from country areas. Yet the proportion of city to country dwellers in South Australia at the time of that study was 74% to 26%. This overrepresentation of non-metropolitan cases in their TBI group may be due to rural residents’ concomitant reliance on long- distance travel and use of cars, which may lead to greater frequency of TBI (Hillier, Hiller,
& Metzer, 1997). The impact of rurality on TBI incidence requires further examination.
2.2.4 Risk Factors
There are several risk factors that make people more susceptible to sustaining a traumatic brain injury (see Table 2.1). As summarised in Table 2.1, adolescents, young children and the elderly are most at risk of sustaining a TBI; as are males, those who regularly drink alcohol or take drugs, those who have a problematic social history or those who have had poor school adjustment. People who have a low socioeconomic income, people with a past history of TBI and those who participate in high risk sports are all also at increased risk of sustaining a TBI.
44 Table 2.1 Risk Factors Associated with TBI
Risk Factors
Age: • Adolescents, young children and the elderly are the most susceptible to TBI (Fortune & Wren, 1999; O'Connor, 2002; Schootman & Fourtes, 2000; Thurman, Alverson, Dunn, Guerrero, & Sniezek, 1999). • The highest incidence of TBI hospitalisation rates in 2004-2005 was in the 15-24 year age bracket, with the number of cases declining exponentially after this point (Australian Institute of Health and Welfare, 2007). • High incidence rates were also noted in those aged 0-4 years (232 per 100,000) and those aged 85 years and older (245 per 100,000) (O'Connor, 2002).
Gender: • Worldwide epidemiological studies have identified a male gender bias in the incidence rate of TBI (O'Connor, 2002). • Three to five males are traumatically brain injured to every one female within the 15- 25 years bracket (Annegers, Garbow, & Kurland, 1980).
Substance abuse: • Approximately half of all people admitted to hospital following TBI are intoxicated at the time of their admission (Brookshire, 2003). • Road traumas, falls and assaults due to intoxication cause the greatest number of TBI accidents (Brookshire, 2003). • Many assaults related to TBI have also been associated with the use of alcohol or drugs in the aggressor, the victim or both (Brookshire, 2003).
School adjustment and social history: • Poor school adjustment and a problematic social history have been linked to an increase in the likelihood of TBI (Haas, Cope, & Hall, 1987). • Poor school achievement is thought to be linked to underlying neurological impairment which results in distractability, attention problems, lowered frustration tolerance, impulsivity, rebelliousness, egocentrism and substance abuse, all of which result in the increased probability of TBI (Giles, & Clark-Wilson, 1993).
Socioeconomic status: • People from a lower socioeconomic group are more likely to sustain a TBI than are those with higher incomes who live in less densely populated regions (Macniven, & Garner, 1994).
Personality traits: • Type A personalities (characterised by competitiveness, impulsivity, and hostility) are more likely to sustain a TBI than are Type B personalities (characterised by cooperativeness, deliberateness and helpfulness) (Evans, Palsane, & Carrere, 1987).
Prior history of TBI: • If a person has a history of a TBI, the probability of them sustaining a second TBI is three times greater than that of the general population. Furthermore, the chances of a person sustaining a third TBI is eight times greater than the probability of a TBI for a person who has no prior history of a brain injury (Annegers, Garbow, & Kurland, 1980).
Participation in high risk sports: • Participation in high contact sports such as boxing, motorcycling, bicycling, snowboarding and rock climbing increases the risk of TBI (Brookshire, 2003).
45 2.2.5 Severity Levels
The degree to which adults are affected by TBI is largely dependent on the extent of their injury (Brain Injury Association of Queensland, 2009). The range of severity of TBI is broad, from mild concussion through to a persistent vegetative state. In Australia, it is estimated that approximately 70 to 85% of all traumatic brain injuries fall into the mild category, leaving 15 to 30% of people with TBI with moderate to severe brain injuries
(Khan, Baguley, & Cameron, 2003).
Both in the acute stage and later in rehabilitation, the severity of a person’s TBI is measured using either the Glasgow Coma Scale (GCS), period of loss of consciousness
(LOC) or duration of post-traumatic amnesia (PTA) (see Appendix A for definition further discussion of these measures) (Brookshire, 2003).
2.2.5.1 Mild TBI
Mild TBI accounts for the majority of all TBI cases (Khan, Baguley, & Cameron,
2003; Youse, Le, Cannizzaro, & Coelho, 2002) and, as expected, in the majority of cases the symptoms that arise from a mild TBI are minor. Common somatic and behavioural complaints include headache, pain, visual or vestibular disturbance, irritability, anxiety, personality changes or social difficulties. Symptoms vary widely among people with TBI, even within a category such as “mild”. Some may report one or two symptoms, whereas others may report the entire spectrum of symptoms (Comper, Bisschop,
Carnide, & Tricco, 2005). The majority of these symptoms diminish spontaneously over time. If the symptoms do not subside a person may develop post concussion syndrome.
This syndrome is a complex disorder in which a combination of post-concussion symptoms, such as headache and dizziness, persist for weeks and sometimes months after injury {Goetz, 2007 #436}. 46 In a systematic literature review, Comper et al. (2005) aimed to assess the effectiveness of interventions for mild TBI. These researchers found that in the 20 studies that fitted their inclusion criteria, four main modes of treatment were identified as effective for mild TBI. The inclusion criteria used in the study were (i) any treatment study of mild
TBI (aside from case studies) which were (ii) performed within 5 years post-injury, (iii) published between 1980 and 2003, and (iv) involved participants of working age (i.e., 16-
65 years). The four modes of treatment identified as effective were pharmacology intervention, cognitive rehabilitation, patient education and other (e.g., behavioural intervention). Of these treatments, Comper et al. found that there was evidence to support the efficacy of only those interventions involving patient education interventions. Given the results of this review, the fact that symptoms following mild TBI largely resolve given time, and given the limited restrictions a mild TBI places on the life of an adult compared to a TBI of a moderate to severe nature, mild TBI is not considered further in this literature review and is not the focus of further research reported in this thesis.
2.2.5.2 Moderate to Severe TBI
When people sustain a moderate to severe TBI they often suffer irreversible physical, emotional, behavioural and cognitive impairments. Given the extent of these impairments and the subsequent impact on quality of life, moderate to severe TBI is the primary focus of this thesis.
Common consequences of moderate to severe TBI affect all aspects of an adult’s life including the neurological or cognitive status, personality, behaviour and lifestyle.
Whether these impairments are large or small, their impact on adults with TBI and their families and friends is life changing. Common impairments resulting from moderate to severe TBI as documented in the literature are listed in Table 2.2.
47 As summarised in Table 2.2, secondary impairments exhibited by adults with moderate to severe TBI include motor function impairments, sensory loss, sleep disturbances, sexual dysfunction, memory impairment, problems with planning, organisation or sequencing, language impairment, impaired judgement, impaired coping skills, reduced self-esteem, emotional lability, reduced insight and frustration tolerance, and apathy and reduced motivation. These impairments can give rise to lifestyle changes including unemployment, difficulty maintaining interpersonal relationships, marital breakdown, family stress, social isolation, a loss of pre-injury roles and reduced independence.
A person’s recovery from the secondary impairments and lifestyle interruptions of TBI is extremely variable. Not surprisingly, adults with severe brain injuries have been shown to recover less well than those with milder injuries (Brookshire, 2003). However, apart from severity of TBI, a number of other prognostic variables can be used to help predict a person’s outcome. These include age, employment status, gender, cognition, environmental factors, self-efficacy for social participation, discharge restrictions and access to rehabilitation. A review of studies investigating the prognostic indicators of moderate- severe TBI is summarised in Table 2.3.
48 Table 2.2 Common Sequelae of Moderate to Severe TBI
Sequelae of TBI
Neurological impairment, including: • Motor function impairment (i.e., balance, coordination, walking, hand function, speech) (Accident Rehabilitation and Compensation Insurance Corporation (ARCIC) & National Health Committee (NHC), 1998; British Society of Rehabilitation Medicine (BSRM), & Royal College of Physicians (RCP), 2003; Forducey, Ruwe, Dawson, Scheideman-Miller, McDonald, & Hantla, 2003). • Sensory loss (i.e., taste, touch, hearing, vision, smell) (ARCIC & NHC, 1998; BSRM & RCP, 2003; Hiller, Hiller, & Metzer, 1997; Khan, Baguley, & Cameron, 2003). • Sleep disturbance (i.e., insomnia, fatigue) (Khan, Baguley, & Cameron, 2003). • Medical complications (i.e., spasticity, post-traumatic epilepsy, hydrocephalus, heterotrophic ossification) (Brookshire, 2003; Fearnside, & Gurka, 1997; Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002; Nolan, 2005; Rose, 2005). • Sexual dysfunction (Khan, Baguley, & Cameron, 2003).
Cognitive-communication impairment, including: • Memory impairment (i.e., impaired new learning, attention and concentration, reduced speed and flexibility of thought processes, impaired problem solving) (BSRM & RCP, 2003; Brookshire, 2003; Fearnside, & Gurka, 1997; Khan, Baguley, & Cameron, 2003). • Problems in planning, organisation and sequencing (Brookshire, 2003; Fearnside, & Gurka, 1997; Khan, Baguley, & Cameron, 2003). • Language impairment (i.e., dysphasia, dyslexia, dysgraphia) (BSRM & RCP, 2003; Brookshire, 2003; Isaki & Turkstra, 2000; Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002; Stewart-Scott & Douglas, 1998). • Impaired judgment and safety awareness (BSRM & RCP, 2003; Khan, Baguley, & Cameron, 2003).
Personality and behavioural changes, including: • Impaired social and coping skills (Brookshire, 2003). • Reduced self-esteem (Isaki & Turkstra, 2000; Khan, Baguley, & Cameron, 2003). • Emotional lability (BSRM & RCP, 2003; Khan, Baguley, & Cameron, 2003). • Reduced frustration tolerance (Brookshire, 2003; Khan, Baguley, & Cameron, 2003). • Reduced insight; disinhibition and impulsivity (ARCIC & NHC, 1998; BSRM & RCP, 2003; Brookshire, 2003; Khan, Baguley, & Cameron, 2003). • Psychiatric disorders (i.e., anxiety, depression, post-traumatic stress disorder, psychosis) (BSRM & RCP, 2003; Khan, Baguley, & Cameron, 2003). • Apathy and reduced motivation (BSRM & RCP, 2003).
Lifestyle changes, including: • Unemployment and associated financial difficulties (Avesani, Salvi, Rigoli, & Gambini, 2005; BSRM & RCP, 2003; Isaki & Turkstra, 2000; Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002). • Inadequate academic achievement (Avesani, Salvi, Rigoli, & Gambini, 2005; Stewart-Scott & Douglas, 1998) • Lack of suitable transport (BSRM & RCP, 2003; Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002; Khan, Baguley, & Cameron, 2003). • Inadequate recreational opportunities (BSRM & RCP, 2003; Khan, Baguley, & Cameron, 2003). • Difficulties maintaining interpersonal relationships (BSRM & RCP, 2003). • Marital breakdown (Khan, Baguley, & Cameron, 2003). • Family stress (Newberry, 2001). • Social isolation (Newberry, 2001). • Loss of pre-injury life roles (Khan, Baguley, & Cameron, 2003). • Loss of independence (Newberry, 2001).
49
As can be seen in Table 2.3, multiple factors can impact upon an adult’s prognosis following TBI. As stated earlier, the primary prognostic factor is the severity of the head injury sustained. The greater the severity of a person’s TBI (as measured by longer periods of LOC, increased time spent in PTA and low GCS scores), the poorer the likely outcome
(Katz & Alexander, 1994; Wagner, Hammond, Sasser, Wiercisewski, & Norton, 2000). The age a person sustains the TBI is also associated with outcome as measured by level of community integration. Other prognostic variables affecting the community integration of adults following TBI include stringent discharge restrictions and environmental obstacles
(e.g., absence of wheelchair access, discriminatory work policies, lack of support services).
Pre-onset employment is associated with improved outcomes, as is intact cognition, which appears to be a predictor of a person’s level of community integration and ability to participate in activities of daily living following TBI (see Table 2.3). A person’s self- efficacy and self-reliance following TBI have also been shown to be associated with increased social participation.
Finally, and most importantly to this study, intensive rehabilitation has been shown to be effective in improving the prognosis of a person following TBI (Cicerone, Mott,
Azulay, & Friel, 2004; Goranson, Graves, Allison, & La Freniere, 2003; Malec, 2001;
Seale et al., 2002).
50
Table 2.3: Prognostic Indicators for Recovering From TBI
Study Aim and measures Sample size Results Comments
Severity Katz (1992) Aimed to identify whether reported PTA (see 114 patients PTA lasting less than 2 weeks was Appendix A) was a reliable indicator of the severity of with diffuse associated with good recovery in a brain injury. axonal injury 80% of cases, whereas no patient (DAI). with PTA lasting longer than 12 weeks made a good recovery. Katz & Aimed to identify whether length of coma was a 119 TBI clients The deeper and longer the period of Alexander reliable indicator of the severity of a brain injury. with DAI. unconsciousness following TBI, the (1994) Tools used included GCS score, length of coma, poorer the eventual outcome. duration of PTA and Glasgow outcome scale (GOS). Wagner, Aimed to identify which factors were associated with Prospective Severity levels using the GCS were This study Hammond, successful return to productive activity 1 year after study with 1 predictive of community integration combined GCS into Sasser, hospitalisation. Tools used included the GCS, year follow-up (CI), as was premorbid education two categories Wiercisiewski, computed tomography (CT) scans, community involving 105 level, premorbid psychiatric history, (mild-moderate or & Norton integration questionnaire (CIQ, made up of home TBI clients. violent mechanism of injury, severe) and found (2002) integration, social integration and productivity discharge status after hospitalisation, that a patient’s subscales) and disability rating scale (DRS). poor alcohol and drug use. GCS was a significant predictor of CI. Zafonte, Mann, Aimed to identify whether reported PTA was a reliable 276 people post- The duration of PTA and age at the Mills, Black, indicator of the severity of a brain injury. Tools used TBI. time of a person’s injury Wood, & included Galveston Orientation Amnesia Test significantly predicted scores on the Hammond (GOAT), age at injury, DRS and the functional DRS, and FIM on admission and (1997) independence measure (FIM). discharge. Note. A critique of measures used is provided in Appendix A.
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Table 2.3 cont.
Study Aim and measures Sample size Results Comments
Age Fleming, Tooth, Aimed to predict CI and vocational 446 Australian CI was predicted by age, This study used a retrospective Hassel, & Chan outcomes 2-5 years after TBI. TBI patients. disability level and cognition. design which resulted in a (1999) Tools used included hospital records number of limitations including containing predictor variables (i.e., large amounts of missing data demographic, injury severity and and difficulty locating functional status) and the CIQ. participants, resulting in possible sampling bias.
Employment status Novak, Bush, Aimed to assess client outcomes in Prospective Prior work history, injury Mythaler, & Canupp terms of premorbid variables (i.e., analysis of 107 severity, and premorbid (2001) premorbid employment status, etc). American TBI cognitive status were all Tools used included CIQ, DRS and patients. significantly correlated with TBI ability to return to work outcomes.
Bush, Novak, Malec, Replicated Novak, Bush, Mythaler, & 294 TBI Validated Novak, Bush, This study aimed to validate a Stringer, Millis, & Canupp’s (2001) study. patients. Mythaler, & Canupp’s (2001) model examining the Madan (2003) findings. contribution of pre-morbid variables, injury status and cognitive and functional status to outcome one year after TBI.
Gender Kaplan (2001) Aimed to investigate the influence of 33 adults with Evidence suggested that women demographic variables on outcome TBI resulting who sustained head injuries had following TBI using the CIQ. from brain higher home integration scores tumour. than did their male counterparts.
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Table 2.3 cont.
Study Aim and measures Sample size Results Comments
Cognition Felmingham, Aimed to examine predictors of 446 Cognition, as well as age, length of PTA, Baugley, & outcome in TBI. Variables Australians length of acute stay, functional disability, and Crooks (2001) considered include PTA, length of with TBI 2-5 pre-morbid educational or employment status acute stay, cognition, memory, years post- contributed to the prediction of the level of CI activities of daily living (ADL), injury. a person with TBI achieved, as well as the functional disability, fine motor ability to successfully complete ADL. skills, CIQ and employment status.
Environmental factors Winkler, Suggested a number of factors thought to Expert opinion. Research is Unsworth, & impact upon the CI and participation of a needed in this area. Sloan (2006) person with TBI, including the physical and social features of the person’s immediate home, work and school environments; services and systems within their community; and laws, regulations and informal rules which can impact upon the life of a person with TBI.
Self-efficacy Dumont, Aimed to identify factors which 53 community Dynamism, self-efficacy and will account for Generalisation of these results Gervais, facilitated TBI clients’ social dwelling adults 51% of the variance of social participation of to the general TBI population Fougeyrollas, participation following who sustained adults with TBI, indicating that they are the is cautioned due to the small & Bertand rehabilitation using two a TBI between main resiliency factors that could improve sample size and exclusion (2004) questionnaires evaluating perceived 1995 and participation of people with TBI. criteria (i.e., patients with mild self-efficacy and social 2000. TBI not requiring participation. rehabilitation were excluded from this study).
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Table 2.3 cont.
Study Aim and measures Sample size Results Comments
Discharge restrictions Durgin (2000) Discharge restriction put in place by Expert opinion only. Research is needed conservative and sometimes overly in this area. protective families and therapists were suggested to impact on TBI patients’ outcomes.
Efficacy of rehabilitation Malec (2001) Aimed to evaluate the 96 TBI clients Positive changes on the MPAI-22 Positive changes were noted in social and impact of with moderate- were noted in clients’ participation in interpersonal functioning despite no comprehensive severe injuries. interpersonal activities, reduction of improvement in basic cognitive neuropsychological day physical disabilities and processes. treatment on societal improvement in emotional regulation 17 participants withdrew from the study. participation using the as a result of attending day therapy. Design utilised was a cohort prospective Mayo-Portland study investigating change from Adaptability Inventory admission to post-discharge. (MPAI-22) and Goal Attainment Scale (GAS). Seale, Caroselli, High, Aimed to evaluate client 71 TBI clients Following 4 months of intensive Design utilised was a cohort prospective Becker, Neese, & outcomes following with severe treatment, significant improvements study investigating change from Scheibel (2002) post-acute rehabilitation injuries living in were noted in all clients’ total CIQ admission to post-discharge. within 5 years of injury community based scores, with improvements made on using the CIQ. residences. all CIQ subscales including home integration, social integration and productivity.
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Table 2.3 cont.
Study Aim and measurements Sample size Results Comments
Goranson, Graves, Allison, Aimed to identify which Retrospective analysis Those who received Closer analysis of the CIQ & La Ferniere (2003) aspects of everyday home, of 42 clients with mild- rehabilitation showed subscales of attendees and non- community and return to moderate TBI who had significantly greater overall attendees of rehabilitation showed work activities would been seen over a 4 year improvement on the CIQ than no difference in social integration change as a result of period. the control group. and productivity, indicating that attendance at a the greatest benefit of multidisciplinary Half of these clients rehabilitation in this group was rehabilitation program. participated in a post- related to their ability to perform Used the CIQ. acute rehabilitation home based tasks. program and half did Design implemented was a non- not. randomised case-control study.
Cicerone, Mott, Azulay, & Aimed to evaluate the 56 clients with Improvements were noted in Significant selection bias was Friel (2004) effects of post-acute moderate–severe TBI all TBI patients. However, noted between treatment groups rehabilitation on were divided into a patients who attended the based on time since injury at community integration. standard neuro- intensive rehabilitation admission to treatment. Used the CIQ. rehabilitation program program made greater gains in Participants who were further or a more structured, social integration. post-injury and had chronic intensive rehabilitation disability were more likely to be program. referred to the intensive program. Design implemented was non- randomised controlled intervention trial.
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Newly proposed clinical care guidelines recommend initial acute care management to limit
TBI impairment and prevent secondary complications, followed by a period of intensive rehabilitation to address impairments and improve the outcomes of adults with TBI, before returning to the community for community-based context-specific therapy aimed at enhancing societal participation and community reintegration (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006). Following these guidelines is said to be essential for achieving the maximum degree of return to pre-morbid level of functioning (Khan, Baguley & Cameron, 2003).
Chapter 3 of this thesis reviews and critiques TBI clinical care guidelines with regard to
TBI rehabilitation efficacy, current trends in service delivery, and issues of access and equity. The following section of this chapter is dedicated to discussion of the impact of TBI on family members who take on the role of primary carer after their relative sustains a TBI of a moderate to severe nature.
2.3 Impact of a Person’s TBI on The Family
As stated earlier, those who survive a TBI are often left with a combination of impairments which impact upon their ability to function productively in their everyday lives. Adapting to these changes following TBI can be extremely difficult, not only for adults with TBI but also for their family. Much of the responsibility for supporting a person with TBI during the years that follow in-patient rehabilitation lies with informal caregiving, most usually from a spouse or partner (Knight, Devereux, & Godfrey, 1998). The impact upon families providing this care is frequently underestimated (Wells, Dywan, & Dumas,
2005).
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This section of the literature review is devoted to discussion of the impact of a moderate to severe TBI on caregivers. It includes a definition of caregiving as it relates to families, as well as discussion of the impact of caring on family functioning. Examination of variations of caregiving experiences depending on whether care is provided by spouses versus parents is then explored, followed by documentation of the needs of caregivers, descriptions of experiences of burden and depression, and discussion of moderators of caregiver burden. Finally, recommendations are made for meeting the rehabilitation needs of families who take on the role of primary carers .
2.3.1 Definition of Family Caregivers
Before discussing the needs of family caregivers, a definition of who they are is required. In the context of this thesis, family carers are those related to an adult with TBI who perform a major unpaid caregiving function (Sinnakaruppan & Williams, 2001).
Because people with TBI are predominantly young males (Annegers, Garbow, & Kurland,
1980), the responsibility for their care usually falls upon their mothers, wives and partners.
2.3.2 Impact of Caring on Family Functioning
In earlier discussion, it was identified that adults with TBI experience their impairments in very specific ways, requiring different types of support, rehabilitation and care. Therefore, it is no surprise that the type, duration and extent of care families are required to provide differ. How families provide care also varies. Trends in caregiving have been shown to vary according to age, culture, socioeconomic status, and income
(Degeneffe, 2001). Family caregiving activities are broad, ranging from help with activities of daily living, such as meal preparation, showering, and getting dressed, to assistance with
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rehabilitation activities, such as advocacy and cognitive therapy. The extent of care families provide ranges from limited support to pervasive assistance in all areas of the injured adult’s life.
Given the impairments sustained as a result of a person’s TBI, relatives are faced with the prospect of coping with a person very different from the one they knew before the trauma. The impact of this caring role on family life and relationships can be profound and often does not diminish with time (Knight, Devereux & Godfrey, 1998). Common caregiver reactions include anxiety, shock, disbelief, denial and frustration (Degeneffe,
2001). According to the results of two critical literature reviews (Brooks, 1991; Perlesz,
Kinsella, & Crowe, 1999), between 23 and 73% of carers show evidence of psychological distress (e.g., depression and anxiety) when attempting to come to terms with their family member’s impairments. Aside from the psychological distress, Harris, Godfrey, Partridge and Knight (2001) described other adverse effects in the lives of people caring for adults with TBI, including role changes, financial difficulties, poor social adjustment, social isolation, increased use of prescription and non-prescription drugs, and alcohol abuse.
As stated earlier, the secondary impairments sustained by an adult with TBI can lead to loss of the functional ability needed to live independently, work, interact socially and meet other personal and family needs. To fulfil these needs, various family members, including parents and spouses, often assume the previous responsibilities of the person with
TBI. These responsibilities present changes not only in how family members relate to and view the person with TBI, but also how they view each other (Degeneffe, 2001).
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2.3.2.1 Spouses’ Versus Parents’ Experiences of Caregiving
In adjusting to role changes, family members face different concerns and challenges
(Degeneffe, 2001). When caring for an adult with TBI, parents may face extended parenthood, often at a stage when it is expected that the demands of parenting will lessen
(e.g., retirement). Spouses of adults with TBI in committed, intimate relationships also face the potential of living with and caring for someone who differs substantially from the person they knew pre-injury. Spouses may face not only an adjustment in their caring role but also in their marital relationship. They are often required to make decisions on behalf of their husband or wife with TBI, and may also need to adjust to functioning like a single parent, as the injured partner may be unable to perform traditional parental functions (e.g., assisting children with homework) (Degeneffe, 2001).
According to a critical literature review conducted by Claude Blais and Boisvert
(2005), findings are differ regarding whether parents and spouses experience significantly different levels of distress when caring for a person with brain injury. Some researchers
(Brooks, Campsie, Symington, Beattie, & McKinlay, 1987; Knight, Devereux & Godfrey,
1998; Livingston, Brooks, & Bond, 1985a, 1985b; Oddy, Humphrey, & Uttley, 1978) report that spouses and parents do not experience significantly different stress levels, but others suggest that that caring for a person with TBI has a more negative impact on spouses
(Florian, Katz, & Lahav, 1989; Gervasio & Kreutzer, 1997; Hall et al., 1994; Kreutzer,
Gervasio, & Camplair, 1994; Mauss-Clum & Ryan, 1981; Panting & Merry, 1972).
Seminal work conducted by Brooks (1986) investigating caregivers’ outcomes 5 years following TBI onset suggested that even if parents and spouses do not differ in terms of measures of subjective burden, the nature of their burden is different. Spouses in Brooks’ study were said to lose their major source of emotional support when their partner sustained
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a severe TBI. At the same time, spouses were considered to experience more dramatic role changes, a decrease in parenting support, and a loss of sexual intimacy and empathetic communication. Parents, however, were said to return to a role that in many respects was familiar (Gervasio & Kreutzer, 1997). They were therefore considered more prepared than partners to accept the burden of care (Gervasio & Kreutzer, 1997).
Research specifically targeting marital stability following TBI suggests increased risk of relationship breakdown following TBI. For example, in an Australian follow-up study of 100 couples, Tate (1989) reported that the divorce rate 6 years following TBI was as high as 55%. This was significantly higher than the 2.4% crude divorce rate for the
Australian population within the same time frame {Australian Bureau of Statistics, 2009
#437}.
A subsequent study by Wood and Yurkadul (1997) revealed significantly high results, with 68% of the participants experiencing relationship breakdown 5 years following the onset of TBI when compared to the population as a whole. However, in interpreting these results, it is important to consider that the participants in both these studies represented the marital adjustment of wives following their husbands’ TBI. The studies were also focused on people who had sustained severe TBI. The outcomes for couples who are affected by milder forms of TBI may be very different. Current literature also reflects the experiences of predominantly married heterosexual couples only. Experiences may vary for same sex couples or couples in de facto relationships. Further research is needed in this area.
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2.3.3 Caregivers’ Needs Following TBI
Regardless of the relationship of a caregiver to the person with TBI, the process of coping with, adapting to and providing care for the adult with TBI is challenging
(Sinnakaruppan & Williams, 2001). Consideration of the needs of those filling the carer role is essential, given that 80% of adults who survive TBI return to the community and need help from their family for support and care (Albert, Im, Brenner, Smith, & Waxman,
2002). The needs expressed by carers are multiple.
Sinnakaruppan and Williams (2001) completed a critical appraisal of the literature relating to the perceived needs of carers of head injured relatives in 2001. As part of their study, they critiqued 13 papers resulting from a comprehensive database search
(MEDLINE, EMBASE: Psychiatry, CINAHL and PsychLit). The method of paper review and selection was not detailed in their publications and therefore cannot be examined here.
However, they found that five trends recurred in the 13 studies of carer need. These recurring trends included carers’ needs for:
• general information regarding the nature of TBI, its effects, and techniques for
adjusting to the impairments sustained by the person with TBI,
• health professionals to answer questions with honesty,
• a plan for the future care for the person with TBI in the event of the carer’s death or
disablement,
• time to themselves outside the home and carer role, and
• hope for improvement, both in terms of impairment improvement in the person with
TBI and a reduction in their caregiving role in future.
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In an Australian study of 29 carers, Stebbins and Leung (1998) identified similar trends in carer need. However, this study moved beyond just identifying needs to examining whether the needs of carers of adults with TBI changed through time. Stebbins and Leung used a postal survey based on the family needs questionnaire to compare the changing needs of eight carers whose relative had sustained a TBI less than 2 years prior to the study, as compared to 21 carers whose relative had sustained their head injury more than 2 years prior. The family needs questionnaire was developed by Kreutzer (1988) to provide information about family members’ needs following TBI. Information was collected regarding perceptions of the importance of needs and the extent to which each need had been met. The results of this study indicated that the “importance ratings” of family needs differed significantly between the two groups. Significantly more needs were reported as being unmet with increased time post-injury. Trends in needs were also noted to change from predominantly medical and professional support needs during the first 2 years to needs based around community, caregiver and family support, financial resources and health information with increased time post-injury. This trend is worrying, given the assertion made by Kreutzer (1994) that unmet needs of family caregivers result in feelings of isolation, feeling misunderstood and feeling unsupported. The findings of Stebbins and
Leung have important ramifications, as they that show carers’ needs increase and change over time. Therefore it is likely that lifelong support for the families of people with TBI is needed.
However, in interpreting the results of this study, its weaknesses need to be considered. These include small sample size, limited carer demographic data, inclusion of participants in the study who had sustained more than one TBI, and a cross sectional
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design. A longitudinal study with a larger sample size and better defined participant group would more closely reflect the reality of changes in caregivers’ needs through time.
Following the critical appraisal by Sinnakaruppan and Williams (2001) of 13 studies of carer need as well as the findings of the Australian study by Stebbins and Leung
(1998), it may be concluded that the needs of carers following TBI are numerous. They include the need for greater information, honesty, forward planning regarding care and respite from their caring role. These needs do not diminish with time.
2.3.4 Caregiver Burden and Depression
Understanding and meeting the needs of those providing care for people with TBI is one essential step needed to alleviate caregiver burden. Caregiver burden is defined as a negative reaction to the impact of providing care on the carer’s social, occupational and personal roles (Given, Kozachik, Collins, Devoss, & Given, 2001). Caregiver burden is hypothesised to be an acute reaction to providing care which arises as new demands in care are introduced or as existing care demands intensify. Burden is said to occur only when an imbalance arises between the levels of care required relative to caregivers’ personal time, social roles, physical and emotional states, financial resources, and formal resources, given the multiple other roles carers may play (Sherwood, Given, Given, & Von Eye, 2005).
When care demands are introduced or become increasingly challenging, carers respond by employing strategies to meet care demands and decrease the burden of providing care.
Carers who are unable to adapt to or modify strategies to meet care demands are said to experience burden (Sherwood et al., 2005).
Caregiver burden is important to consider, because literature about chronic illness suggests that caregiver burden and depressive symptoms are interrelated (Clyburn, Stones,
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Hadjistavropoulos, & Tuokko, 2000). Caregiver depressive symptoms, as indicated by mood disturbances, have been shown to be a result of stress from caregiving and may be manifested in feelings of loneliness, isolation, fearfulness and being easily bothered
(Sherwood et al., 2005).
Sherwood et al. (2005) evaluated the relationship between carer demands, recency of changes in care demands, caregiving burden and depression in a cross sectional study of
488 family carers of patients (over 55 years) who had been recently discharged from acute care. Patients included in this study suffered from a range of conditions including general medical impairments; cerebrovascular, musculoskeletal, circulatory or pulmonary disorders; major limb skeletal fractures; or neoplasms. All carers participated in interviews.
Areas of investigation included patient cognitive and neuropsychiatric function, patient activities of daily living, carer depression and reaction assessments.
The findings indicated that female carers and spouses were more likely to report higher levels of caregiver burden than male or parental carers. Results also indicated that more recent caregiving demands were perceived to be of higher burden and that symptoms of carer depression were likely to increase with greater caregiving demands. Declining patient cognitive and emotional status were also twice as likely to predict carer burden than declining physical skills. Worsening physical and functional skills were also associated with increased support from secondary carers, whereas declining patient cognition was associated with carers’ feelings of abandonment (Sherwood et al., 2005).
Limitations of the study by Sherwood et al. which need to be acknowledged include its cross sectional design and large proportion of Caucasian participants. A longitudinal study with a more diverse ethnic participant base would increase the study’s generalisability while providing more insight into changes in caregiver burden through
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time. Nevertheless, this study has interesting implications for the carers of people with TBI.
Given that people with TBI commonly suffer cognitive, emotional and behavioural problems, it might be thought that the group of associated carers was at greater risk of feelings of abandonment, caregiver burden and depressive symptoms than carers of adults with other impairments (e.g., those with skeletal fractures or pulmonary disorders).
.
2.3.4.1 Caregiver Burden and Depression Following TBI
Seminal work by Brooks and colleagues (Brooks, Campsie, Symington, Beattie, &
McKinlay, 1986; Brooks, Campsie, Symington, Beattie, & McKinlay, 1987; Brooks &
McKinlay, 1983; McKinlay, Brooks, Bond, Martinage, & Marshall, 1981) saw the completion of the first longitudinal research project investigating carer outcomes with a group of 55 relatives of adults with TBI. These relatives were followed up at 3 months, 6 months, 1 year, 5 years and 7 years post-TBI.
Brooks et al. (1987) found that carers began to report personality and emotional changes in their relative with TBI with increasing distress from 1 year post-injury. These changes were associated with a strong sense of burden. The most frequent changes affecting carer burden identified by Brooks’ studies were related to affect, emotional control and behaviour changes. Aggression, irritability, childishness and dependency were a few of the behaviours carers reported to be most distressing. Of greatest interest in this longitudinal study was the finding that in the fifth year of assessment the level of subjective burden of caregivers had significantly increased from the first year following TBI. This level of burden did not alter on review 7 years following TBI.
A second longitudinal study of caregiver burden in TBI was conducted by Marsh and colleagues (Marsh, Kersel, Havill, & Sleigh, 1998; Marsh, Kersel, Havill, & Sleigh,
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2002). Marsh and colleagues followed-up 69 carers at 6 months and 1 year following severe TBI in their family member. They reviewed the burden of carers using a structured questionnaire administered by a psychologist at both time intervals following TBI. The measures included in the questionnaire were made up of scales of carer demand, depression, anxiety, and social adjustment, as well as behavioural ratings of the adult with severe TBI. The results indicated that:
• 90% of carers believed their family member had a significant cognitive impairment
subsequent to their TBI,
• 68% of carers reported they were socially isolated and this caused them great
distress,
• 39% of carers reported clinically significant levels of anxiety and 37% reported
levels of depression judged as clinically significant by a psychologist,
• 24% reported a change in their marital role as a result of their family member’s TBI
and 41% reported a disruption to their role within the family unit which they found
most distressing,
• 71% of carers reported having less time for themselves, and
• 62% reported changes in their sleep pattern as a result of caring for a person with
TBI.
At 1 year follow-up, the same group of carers reported an overall improvement in social adjustment. In addition, cognitive impairments which had been rated by carers as distressing were less so after a year of caring, indicating possible adjustment and adaptation to impairments over time. Yet negative emotional behaviours (e.g., lack of empathy for carers) exhibited by the adults with severe TBI which were not rated as distressing at 6
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months were rated as extremely distressing by carers at 1 year. In addition, a significant correlation was noted between the emotional functioning of an adult with TBI and the social adjustment of his or her carer.
The results of this follow-up study indicated that carers adapted more easily to relatives’ cognitive impairments than emotional disturbances, and although these impairments might still be present at 1 year follow-up they are not of primary importance to caregivers. An important limitation of this study, however, is the fact that ratings of emotional and cognitive impairments of the adults with TBI were made by the carer and were not a result of an objective measure (e.g., Disability Rating Scale (Rappaport, Hall,
Hopkins, & Belleza, 1982)). Therefore, the reported high incidence of impairment (90% of the adults with TBI had cognitive impairments) was a result of carer perception and might not be an accurate reflection of the level of incidence. Moreover, increases in carer burden were not noted in Brooks’ et al (1987) study until 5 years following TBI onset. Marsh et al.
(2002), however, followed carers for only 1 year post-TBI. A longer follow-up period might have produced more useful insights into changes in carer burden through time.
Machamer, Temkin, and Dikmen (2002) investigated the level of burden of 180 family carers at 6 months post-TBI. Instruments employed throughout the structured interviews included measures of the level of assistance required to care for the adult with
TBI, the number of activities carers had given up as a result of their caring role, caregiver burden, depression, and changes in the functional and neuro-behavioral status of the adult with TBI. The results indicated that the majority of significant others reported positive experiences when caring for the family member with TBI. For example, 93% reported they were happy to have the opportunity to care for the person with TBI and 92% reported they felt good about caring for their family member at least some of the time. The study of
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Machamer et al. is one of few which allowed carers to reflect and report on the positive aspects of caregiving following TBI. Nevertheless, Machamer et al. also found that carer experience was closely related to behavioural changes in the adult with TBI. They, like
Marsh et al. (2002) and Brooks’ et al. (1987), found that a relationship existed between caregiver distress and problematic behaviour in the adult with TBI.
The main limitation of the study by Machamer et al. (2002) is the early time frame within which it was implemented (6 months post-injury). As shown in research conducted by Brooks et al. and Marsh et al., the time of 6 months post-injury may not be long enough for relatives’ perceptions of caregiving to become negative. For example, some relatives who are positive about experiences at 6 months may feel differently later if the problems that were once tolerated do not resolve.
Nabors, Seacat and Rosenthal (2002) further examined carer burden in a study which assessed the predictors of caregiver burden as they related to physical, cognitive and affective/behavioural impairments in the adult with TBI. Nabors et al. reflected on the experiences of 45 significant others, 24 of whom were African Americans. Nabors et al. reported experience described using postal questionnaires (response rate of 15%) and follow-up phone interview. Measures of caregiver burden included the Head Injury Family
Interview (Kay, Cavallo, Ezrachi, & Vavagiakis, 1995), Family Needs Questionnaire
(Kreutzer, 1988), Family Assessment Device (Miller, Epstein, & Baldwin, 1983) and the
Non-support Scale of the Personality Assessment Inventory (Morey, 1991). Results indicated that carers rated the need for medical information more highly than they did the need for instrumental support (e.g., getting enough sleep, spending time with friends).
Depression and anxiety were reported as “frequently experienced” by 50% of significant
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others, and social isolation was reported as being frequently experienced by 20% of African
Americans and 40% of white Anglo-Saxons. Overall, Nabors et al. (2002) found that:
• The higher the household income, the lower the perceived burden.
• The younger the carer, the fewer carer needs were met.
• The lower the educational status of the carer, the higher the perceived carer burden.
These findings make sense. The older the carer, the more experience with caregiving. Education and income are related, such that with higher levels of both, the carer should have greater access to resources, which again could reduce caregiver burden.
Further findings from Nabors et al. indicated:
• The poorer the payer source, the less access to resources for the adult with TBI.
More specifically, adults with limited insurance who sustained a TBI were less
likely to receive outpatient therapy, vocational services, access to transitional
living, adequate transportation and equipment. This suggests that limited financial
resources may directly impact upon the outcome of people with TBI, which then
indirectly impacts upon caregiver burden.
• The higher the percentage of perceived needs met, the lower the degree of
caregiver burden.
The ability to generalise the results of Nabors et al. (2002) is limited by several factors. The small sample size and low response rate (15%) to the study’s questionnaire limit the generalisation of its findings, as does the possibility of sampling bias. That is, caregivers who responded to the survey might have experienced less burden and might therefore be unrepresentative of caregivers overall. The findings also have limited generalisability to the Australian context given the differing funding structures available to
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remunerate service providers. Funding affecting access to services is further discussed in
Chapter 3.
The only Australian large scale study investigating the long-term adjustment of family carers following TBI was completed by Ponsford, Olver, Ponsford and Nelms in
2003. Ponsford et al. reviewed the outcomes of 143 compensable individuals with TBI and their families at follow-up at 2, 3 and 5 years post-injury. Their study was of a cross sectional nature. At follow-up, individuals with TBI and their primary carer were interviewed by their rehabilitation consultant. Measures implemented during interviewing included the Family Assessment Device (Miller, Epstein & Baldwin, 1983), Leeds Scale for Self Assessment of Anxiety and Depression (Snaith, Bridge, & Hamilton, 1976),
Structured Outcome Questionnaire (Ponsford & Olver, 1999), Craig Handicap Assessment and Reporting Technique (Whiteneck, Charlifue, Gerhart, Overholser, & Richardson,
1992), Sickness Impact Profile (Bergner, Bobbitt, Carter, & Gilson, 1981) and Novaco
Anger Control Questionnaire (Novaco, 1975). The results indicated that, on average, participants demonstrated healthy family adjustment. Unhealthy family adjustment, when it occurred, was seen on neurobehavioural subscales of the family assessment device. No differences in family adjustment were noted dependent on living situation (i.e., whether the primary carer lived with the person with TBI or not), nor spouse versus parent status.
Limitations of this study include that it considered only the experiences of compensable patients and their families, it had a biased sample as the authors reviewed only the experiences of carers who continued to attend follow-up appointments, and it was based on a cross sectional rather than longitudinal design. Therefore, the results do not reflect changes in caregivers’ experiences through time.
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Ponsford et al. (2003), found that 31% of carers presented with clinically significant levels of anxiety and 32% of carers presented with clinically significant levels of depression. Like the studies reviewed before (Brooks et al., 1986; Brooks et al., 1987;
Brooks & McKinlay, 1983; Machamer et al., 2002; Marsh et al., 1998; Marsh et al., 2002;
Sherwood et al., 2005), the findings of this study support the need for ongoing assistance for carers in dealing with the neurobehavioral sequelae exhibited by their relatives with
TBI. Such support is needed, as frequently carers reporting the greatest levels of anxiety also report the highest degrees of negative emotional, cognitive and behavioural changes in the adults they care for.
Overall, results from the studies reviewed in this section (Brooks et al., 1986;
Brooks et al., 1987; Brooks & McKinlay, 1983; Machamer et al., 2002; Marsh et al., 1998;
Marsh et al., 2002; McKinlay et al., 1981; Nabors et al., 2002; Ponsford et al., 2003) indicate that carers with negative experiences of caring are more likely to have relatives with more severe traumatic brain injuries, who are more impaired on neurobehavioral measures and are more functionally dependent on their carers. Furthermore, the carers are more likely to be younger, with fewer years of education and fewer support resources.
Carers are also more likely to be giving up some of their activities to care for their relatives or to be making financial sacrifices related to their relatives’ injury, and these carers are more often depressed.
The studies reviewed here demonstrate flaws in their design, such as limited sample sizes with heterogeneous participant bases. Despite their different designs the consistency of their findings allows conclusions regarding the experience of caregiver burden to be legitimately drawn. The following section of this chapter reviews the literature pertaining to moderators of caregiver burden. Moderators of burden are important to consider given the
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assertion by Knight, Devereux and Godfrey (1998) that much of the responsibility for supporting an adult with TBI following residential rehabilitation lies with informal caregivers, the needs of whom must be addressed.
2.3.5 Moderators of Caregiver Burden
This section of the literature review explores factors, other than characteristics of adults with TBI, which are associated with caregiver adjustment and moderators of caregiver burden. Factors such as personal resources have been shown to act as moderators of carer burden, with the possibility of improving the psychosocial adjustment of caregivers. Such resources include external support (i.e., social support), effective use of coping strategies, practical assistance, and personal characteristics, including health and finances (Harris, Godfrey, Partridge, & Knight, 2001). Studies reviewing the use of these resources as moderators are critically reviewed here.
Wells, Dywan and Dumas (2005) investigated the adjustment of carers in the context of injury-related neurobehavioral sequelae and family coping strategies. As part of their study, Wells et al. distributed questionnaires, within a cross sectional design, to 72 carers whose time spent caring ranged from 1 to 40 years. Measures of adaptive functioning, caregiver stress, life satisfaction, methods of coping and symptoms of distress were contained within the questionnaires. As in the studies reviewed above, the results of this study indicated that behavioural and emotional problems were most predictive of carer adjustment, with lack of empathy displayed by the adult with TBI toward the caregiver’s situation being the most detrimental to subjective measures of quality of life for carers.
Wells et al. (2005) identified that positive coping strategies included both carer self- reliance and external support available from family and friends. Carers with the strongest
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sense of ability to cope displayed more positive feelings towards their carer role. Successful implementation of coping strategies was also associated with a decrease in negative carer outcomes. These findings are important, as they suggest that targeted intervention with families regarding training in the use of positive coping strategies may help alleviate carer burden and associated feelings of depression and anxiety, which have been shown to be long lasting (Brooks et al., 1986).
When interpreting these results, it is important to note that the participants targeted in this study were recruited from brain injury associations. Therefore, this sample may be more likely to be actively involved in seeking information and implementing positive coping strategies such as attending support groups. The general population of carers might display different coping behaviours, which may or may not be as successful in alleviating caregiver burden. This area requires further research.
Harris, Godfrey, Partridge and Knight (2001) reviewed a different moderator of burden, the impact of carer appraisal as a moderator of carer burden and associated feelings of depression following traumatic brain injury. They reviewed the experiences of 58 carers of people with severe TBI through an interview with a clinical psychologist. Both the carer and person with TBI were present in the interviews. Measures taken during the interviews included a semi-structured social behavioural assessment and a self-rating depression scale.
Harris et al. (2001) found that 84% of their sample of carers presented with clinically significant symptoms of depression. As in other studies reported, they also found that carers experienced greatest distress when the relatives they cared for exhibited behavioural and social problems (i.e., poor social adjustment).
In terms of caregiver appraisal, Harris et al. (2001) found that if carers appraised a situation as highly distressing their depression scores were more likely to be greater than
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those who appraised their situation as less distressing. Harris et al. also found that external support was a moderator of depression. Such support acted to mediate the impact of stress on a carer, thereby improving their mood. The findings of this study suggest that, without positive carer appraisal behaviours and external support, carer depression is greatest. The implications are important, as the ability of carers to positively appraise their new role and access support may be predictive of their ability to cope once the family member is discharged from residential services. However, it must be noted that positive aspects of caregiving were not considered in this study. Therefore, important moderators of burden reported by those happy with their caring role were not considered. Moreover, the study was implemented using a cross sectional design. Given that coping styles and appraisal skills are likely to change with time and experience (Degeneffe, 2001), a longitudinal design examining the same research question would be warranted.
Another study of the impact of carer appraisal after TBI was undertaken by Hanks,
Rapport and Vangel (2007), who investigated the experiences of 60 carers of adults with moderate TBI who had sustained a head injury between 6 months and 15 years prior to the study. Those who took part in this study were paid for their participation. Instruments measuring caregiver functioning included the Social Provision Scale (Cutrona & Russell,
1987), the Family Assessment Device (Miller, Epstein, & Baldwin, 1983), and the
Caregiver Appraisal Scale (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989). Ratings of the function of participants with TBI were also taken using the Glasgow Coma Scale
(Teasdale & Jennett, 1974), Disability Rating Scale (Rappaport, Hall, Hopkins, & Belleza,
1982) and Functional Independence Measure (Keith, Granger, Hamilton, & Sherwin,
1987).
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The results of this study indicated that the cognitive functioning of persons with
TBI was related to carer appraisal. When the cognition of an adult with TBI is impaired, carer burden is increased and associated positive carer appraisal is decreased. In contrast, caregivers who believed that they and their family had effective tools to cope with the challenges that arose when caring for an adult with TBI felt more positively about their roles as carers. Carer mastery, as demonstrated by increasing experience and improved appraisal, was also noted to decrease carer distress and perceived burden (Hanks, Rapport,
& Vangel, 2007).
Social support has also been shown to moderate carer distress. Ergh, Rapport,
Coleman and Hanks (2002) investigated the characteristics of adults with TBI and their carers’ associated degree of distress and family dysfunction. Ergh et al. interviewed 60 adults with TBI and their primary carers. Measures used included the Glasgow Coma Scale
(Teasdale & Jennett, 1974), Alcohol Screener (Ewing, 1984), Neuropsychological
Functioning (D'Elia, Satz, Uchiyama, & White, 1996), Patient Competency Rating
(Prigatano & Fordyce, 1986), Neuropsychology Behavioural and Affect Profile (Nelson,
Satz, & D'Elia, 1994), Social Provision Scale (Cutrona & Russell, 1987), Brief Symptom
Inventory (Derogatis & Melisaratos, 1983), and Family Assessment Device (Epstein,
Baldwin, & Bishop, 1983).
The results of this study indicated that the neurobehavioral and affective impairments of an adult with TBI greatly influence family distress and functioning. Family dysfunction was, however, inversely related to perceived social support. Social support in this study related to caregivers’ self-rated perceptions of connectedness and having someone come to their aid if needed. Examples of items participants rated on a five point
Likert scale with regard to perceived access to social support included “There are people I
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can depend on to help me if I really need it” and “I feel a strong emotional bond with at least one other person”. According to Ergh et al. (2002), social support buffered some of the characteristics of individuals with TBI. Social support was also shown to have a powerful influence on caregiver well being. Without good social support, caregivers became increasingly distressed over time.
Unfortunately, of the participants studied, those with least social support were caring for people with the worst neuropsychological impairments and poorest neurobehavioural, affective and functional outcomes and therefore were the most distressed carers in this group. These participants demonstrated the greatest need for social support given the level of dependence of those they cared for.
Generalisability of the results of this study is limited by the small sample size and the fact that participants were paid to take part in this study. Therefore, they might have been keen to give researchers the “answers” they thought the researchers wanted to hear.
Regardless of this, the research has important implications for service planning, particularly the provision of support groups, respite care and formal support services for the carers of those most severely affected by TBI.
The final study reviewed in this section is that of Knight, Devereux and Godfrey
(1998), who investigated caregiver burden as moderated by satisfaction with social support, perception of coping skills and appraisal of symptoms of strain. As part of their study,
Knight et al. devised a questionnaire made up of the following scales: the Burden Scale
(Knight, Devereux, & Godfrey, 1997), Centre for Epidemiological Studies – Depression
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Scale (Radloff, 1977), Symptom Distress List1, and Social Support Questionnaire (Sarason,
Levine, & Basham, 1983). Fifty-two carers took part in this study, all of whom were recruited from regional head injury societies. The results indicated that initially the impairments which caregivers found most difficult to cope with following TBI were changes in personality and behaviour. Of these, the most distressing for carers were mood disorders (i.e., lability, anxiety, depression, anger, aggression). The presence of these disorders were predictive of carer burden.
Satisfaction with social support had little impact on burden scores in this study.
These findings contrast those of Ergh et al. (2002). However, it should be noted that the carers recruited to participate in this study were volunteers recruited from the membership of the Canterbury, Otago and Southland head injury societies in New Zealand. These societies provided mutual support and professional assistance for people with TBI and their carers. Therefore, it can be assumed that participants in this study had ready access to support if needed. Those recruited by Ergh’s et al., however, were identified from the
Southeastern Michigan TBI database. It is unknown whether these carers were members of a support group. Therefore, impact of perceived access to support may have a greater bearing on their feelings of distress and burden. The ability of carers to cope with stressors associated with caring was, however, also predictive of burden in the study by Knight et al.
(1998).
Overall, the results of the studies reviewed here indicate that caregiver distress and burden appear unrelated to the severity of adults’ TBI but related to the severity of the neurobehavioral problems they have acquired as a result of their TBI (Machamer et al.,
1 The Symptoms Distress List was compiled by Knight, Devereux and Godfrey (1998) following review of previous research with head injured clients. It was made up of 20 symptoms of emotional distress or behavioural disturbance. It is not a standardised tool, nor has it been used in previous TBI research. - 77 -
2002; Nabors et al., 2002; Wells et al., 2005). The symptoms of carer distress related to neurobehavioral problems do not appear to change with time (Brooks et al., 1986; Marsh et al., 2002). However, they appear to be moderated by changes in caregiver coping strategies
(Wells et al., 2005), positive appraisal (Hanks et al., 2007; Harris et al., 2001), degree of mastery (Hanks et al., 2007) and ability to access external social support (Ergh et al., 2002).
These findings are important to consider when thinking about and planning for the changing needs of carers once adults with TBI leave residential rehabilitation services and are discharged into an environment where services are progressively removed over time.
2.3.6 Support for Families Caring for People With TBI
This final section about the impact of TBI on family carers reviews the outcomes for carers when they are provided with support in the form of counselling and education following the discharge of their relative from residential rehabilitation services. Only two studies are reviewed here, providing examples of the use of different support structures in alleviating caregiver burden.
Albert, Im, Brenner, Smith and Waxman (2002) investigated the effect of a telephone social work liaison program on carer outcome following client discharge from a brain injury unit. Fifty six adults with acquired brain injury and their primary caregivers took part in this program. The program involved three components: caregiver training and education upon discharge, designation of a social worker to support the family carer up to the time of client discharge, and maintenance of the social worker liaison, providing support through telephone contact after discharge.
Data collection tools used by Albert et al. included a structured questionnaire with quality of life ratings, caregiver burden scales, and satisfaction and mastery measures.
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These measures were developed by the researchers following a comprehensive literature review and expert consultation. All measures were constructed in Likert format and assessed the frequency of behaviours over the previous month. In addition to the questionnaire, a telephone log describing the amount of contact with carers, topics of conversation, and reasons for support, was compiled. Two thousand telephone calls were noted to have occurred on behalf of the participants taking part in the study. Eighty-five percent of these calls were initiated by a member of the social work team.
The outcomes for carers in this study were compared to a historical comparison group, made up of 29 caregivers who were not part of the program. The historical control group consisted of family carers of adults with ABI discharged during the year prior to the study. Of those contacted to participate in this group, only 50% agreed to participate.
Program outcomes indicated that the liaison group had more favourable ratings of quality of life (p <0.05) than the historical comparison group. It was assumed that the reason for this was participation in the social worker supported liaison program. However, the fact that the historical comparison group had been caring for adults with ABI for a longer time period should be considered. Research presented earlier suggests that carer burden is associated with increased time post-TBI. Therefore, carers in the historical comparison group might have had increased stress and less favourable quality of life due to increased time post-onset.
Overall, this study shows the benefits of auxiliary services in providing carer support following discharge from residential services. However, the sample size of the participants studied was small, and important racial differences were noted between the control and historical comparison groups, which might indicate differing caregiving styles.
Moreover, to undertake this project, 1.5 full time equivalent social workers were employed
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in addition to already employed staff. Further research should be conducted in this area, particularly given the increased number of staff needed for its implementation, before such a program is established.
Another program employed to improve the outcomes of carers following discharge of their relatives from formal rehabilitation is attendance at community-based educational programs. Evaluation of such a program was undertaken by Sinnakaruppan, Downey and
Morrison in 2005. Their educational program addressed three domains (i.e., memory, executive functioning and emotion) and included two sets of eight sessions. One set targeted the person with TBI, the other their carer. Sessions included a combination of presentations, group discussions and role plays. Forty two carers and 41 people with TBI took part in this program.
Sinnakaruppan et al. (2005) used the Hospital Anxiety and Depression Scale
(Zigmond & Snaith, 1983), General Health Questionnaire (Goldberg, 1978), Rosenberg
Self-esteem Scale (Rosenberg, 1989), the Cope Scale (Carver, Scheier, & Weintraub,
1989), Functional Independence Measure (Granger & Gersham, 1984) and three cognitive measures from the Wechsler Adult Intelligence Scale (WAIS) (Wecshler, 1997),
Rivermead Behavioural Memory Test (Wilson, Cockburn, & Baddeley, 1991) and
Behavioural Assessment of Dysexecutive Syndrome (Wilson, Alderman, Burgess, Emslie,
& Evans, 1996) to evaluate participant outcomes. Carer and patient outcomes were assessed both at the conclusion of the program and 3 months after its completion. To evaluate the program, both an experimental and control group were included.
Results of the study indicated that carers’ anxiety levels reduced following program completion. However, these reductions did not reach statistical significance. Improvements in the self-esteem and cognitive abilities of the adults with TBI as a result of the program
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were significant. However, according to Sinnakaruppan et al. (2005), although it was not formally measured, the emotional and social environment of the group also provided an excellent opportunity for family members to share their experiences, feelings, anger, hopes and fears.
Despite the reported positive outcomes of this program, the limitations of this research are numerous, including the limited data showing program efficacy both soon after completion and at longer time periods post-implementation. This study was implemented as part of a fixed term research project with a time restriction of 12 months. Therefore, no time was allocated to evaluate carer and client outcomes at 6 or 9 months follow-up.
Important demographic data about participant characteristics were also not included, such as participants’ prior level of education, their employment history and age. Further research is needed to examine the benefits of community-based educational programs in reducing carer burden in order for them to be included as standard practice following the discharge of an adult with TBI from a residential rehabilitation program.
2.4 Summary
Advances in medical care have resulted in better survival rates for those who suffer severe traumatic brain injuries (Fearnside, Crook, & McDougall, 1993; Lyle, Pierce, &
Freman, 1986). Yet the sequelae of these injuries have been shown to impact dramatically not only upon adults with TBI but also upon their family and friends. Adults with moderate to severe TBI evidence a combination of neurological, cognitive, behavioural, personality and lifestyle interruptions, such as unemployment, marital breakdown, social isolation, and loss of independence. Research and clinical practice indicate that outcome following TBI is improved by immediate acute medical care and intensive rehabilitation (Cicerone, Mott,
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Azulay, & Freil, 2004; Goranson, Graves, Allison, & La Freniene, 2003; Malec, 2001;
Seale et al., 2002).
Family members who take on the role of primary carer after their relative sustains a
TBI have also been shown to be detrimentally affected. Clinically significant levels of depression and anxiety have been reported for as many as 73 to 84% of caregivers who care for adults with severe TBI (Brooks, 1991; Harris, Godfrey, Partridge, & Knight, 2001;
Perlesz, Kinsella, & Crowe, 1999). These symptoms have been reported to be associated with caregiver burden. Moderators of carer burden have been reviewed in this chapter, and include positive coping strategies, positive carer appraisal, carer mastery and social support.
Carer participation in rehabilitation programs has also been associated with improved carer outcomes.
2.5 Conclusion
The literature reviewed in this chapter demonstrates the detrimental impact of TBI, not only on the person who sustain the TBI, but also on the family who often take on the role of primary carer once the relative is discharged from residential rehabilitation services.
The majority of the research reviewed in this chapter is based on projects undertaken in the
United States (USA), Canada and the United Kingdom (UK). More research is required to review the experiences of Australian adults with TBI and their families following TBI.
The following chapter reviews the efficacy of rehabilitation in improving the outcomes of adults with TBI and their families following moderate to severe TBI. Chapter
3 also contains a review and critique of current clinical care guidelines systematically developed to assist practitioners and TBI healthcare consumers in decisions regarding appropriate healthcare solutions. Current trends in service provision are also reviewed, and issues of access and equity in TBI in Australia are considered.
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CHAPTER 3
THE CONTEXT OF TBI REHABILITATION
3.1 Introduction
The previous chapter noted the wide reaching impact of TBI not only on the person who sustains the injury but also on family and friends. Prognostic indicators and caregiver research suggested that targeted strategies through individualised rehabilitation programs are effective in improving the outcomes for both those who sustain head injuries and their families (Albert, Im, Brenner, Smith, & Waxman, 2002; Cicerone, Mott, Azulay, & Friel,
2004; Goranson, Graves, Allison, & La Freniere, 2003; Malec, 2001; Seale et al., 2002;
Sinnakaruppan, Downey, & Morrison, 2005). Recently proposed best practice guidelines recommend initial acute care management, followed by a period of intensive rehabilitation, before returning to the community for community-based context-specific therapy (British
Society of Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand
Guidelines Group, 2006). Following these guidelines is thought to be essential to achieving people’s maximal degree of return to independence following TBI (Khan, Baguley, &
Cameron, 2003).
This chapter opens by defining the concept of rehabilitation, followed by a discussion and critique of the formation of best practice guidelines. It then defines the issues of access and equity and the importance of considering these constructs in this study.
Following these definitions, a discussion of TBI service inequities is presented. The challenges of rural health and inequity resulting from various health funding models are reviewed. Finally, directions for future research are proposed. These directions form the basis of this thesis.
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3.2 Rehabilitation
Researchers worldwide have identified that participation in rehabilitation is one of the key variables shown to improve an adult’s prognosis following TBI (Cicerone et al.,
2004; Goranson et al., 2003; Malec, 2001; Seale et al., 2002). Intensive rehabilitation following acute medical care has been shown to positively affect community integration and return to work. It is, therefore, an essential component of all TBI management. This section of the literature review is devoted to rehabilitation. It includes an introduction to rehabilitation medicine, a discussion of rehabilitation with reference to TBI, a description of the history of TBI rehabilitation and a critique of recently published clinical care guidelines for the rehabilitation of adults with TBI.
3.2.1 What is Rehabilitation?
Rehabilitation is a key component of many healthcare experiences. It focuses on the diagnosis, evaluation and treatment of a person with a ‘functional impairment’ (Department of Families Housing Community Services and Indigenous Affairs, 2010). Such impairments may arise as a result of disease, surgery, injury or other disorder. The main aim of rehabilitation is to maximise the restoration of a person’s function in the areas of physical, psychological, social and vocational wellbeing. Rehabilitation also aims to maintain a person’s health while preventing any secondary complications of their impairment (Australasian Faculty of Rehabilitation Medicine, 2006).
Rehabilitation is comprehensive and involves close collaboration between multiple rehabilitation specialists. These specialists include the medical team (e.g., consultants, registrars, interns and nursing representatives), allied health team (e.g., physiotherapists, speech pathologists, occupational therapists, dietitians, music or recreational therapists, and
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social workers), allied health assistants and domestic staff (e.g., kitchen/food services).
Rehabilitation specialists work in conjunction with their clients to develop rehabilitation programs and review rehabilitation goals (Australasian Faculty of Rehabilitation Medicine,
2006).
3.2.2 Rehabilitation and Traumatic Brain Injury
The rehabilitation of people with TBI is a lifelong endeavour (Khan et al., 2003) and, as stated above, requires the close collaboration of many neurological rehabilitation specialists. Close interdisciplinary collaboration in TBI is an essential part of rehabilitation, as an adult’s physical, cognitive and behavioural sequelae cross professional boundaries and require a unified, integrated approach to treatment that extends beyond the rehabilitation clinic into the person’s home and community (Brookshire, 2003).
Rehabilitation following a TBI is typically provided in four stages (see Figure 3.1). The first stage is typically referred to as the acute care or ward-based stage. The second is the post-acute care, residential or inpatient rehabilitation stage. The third stage, the non- residential rehabilitation stage, is otherwise referred to as the community-based or outpatient rehabilitation stage. The fourth and final stage of TBI rehabilitation is the long- term community support stage. More information on the services in each stage is provided below.
Once a person with TBI is medically stable, rehabilitation begins. This means that rehabilitation is an essential part of even the acute stages of a client’s care. In the acute stage, rehabilitation focuses on reducing current impairments while attempting to prevent secondary complications. For example, the medical team of an adult with TBI will focus on managing any neuropathophysiological changes while the physiotherapist, dietitian, speech
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Figure 3.1 Model of Stages of Rehabilitation for Adults with TBI
Acute care stage
Residential rehabilitation stage Inpatient rehabilitation
Non-residential rehabilitation stage Outpatient rehabilitation Community based rehabilitation
Longer-term community support
Reassess as required
Note. Figure 3.1 was adapted from Turner-Strokes, L. (2001) Head injury rehabilitation – How should it be provided? pathologist and occupational therapist will monitor the possible development of spasticity, contractures, malnutrition, dysphagia or pressure sores (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003).
Once a person with TBI is deemed able to leave the acute setting, as determined by his or her medical consultant, a period of intensive rehabilitation may be recommended.
Intensive rehabilitation at this time is recommended to aid a client’s transition between
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hospital and home. Rehabilitation at this stage primarily addresses a client’s mobility, independence in self-care, and behavioural and cognitive changes (Fearnside & Gurka,
1997; Turner-Stokes, Disler, Nair, & Wade, 2005).
Discharge from inpatient rehabilitation settings can occur at different times. Even after severe injuries people may be discharged home in the early stages of their rehabilitation. Upon returning home, it is important for clinicians, adults with TBI and their family members to be aware that this is not the end of rehabilitation but the beginning of rehabilitation in a context-specific setting (New Zealand Guidelines Group, 2006).
Once they have returned home, ongoing rehabilitation is required for persons with
TBI to maximise their ability to function within their environment. In community-based rehabilitation, the emphasis of treatment is on extended activities of daily living, social integration and return to work or education. Interventions are aimed at enhancing participation, improving the adult’s quality of life, psychosocial adjustment and reducing carer stress (British Society of Rehabilitation Medicine & Royal College of Physicians,
2003).
According to the New Zealand Guidelines Group (2006), the British Society of
Rehabilitation Medicine (BSRM) and the Royal College of Physicians (RCP) (2003), TBI rehabilitation across all four stages is underpinned by five key principles. These five points are detailed here.
1. Rehabilitation is non-linear: Adults with TBI need to access different services at
different times in their recovery. Their transition between services should be
smooth, with effective communication and information sharing occurring
between all stages. Adults with TBI should also be continually re-assessed and
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their needs re-evaluated. For example, if after discharge from an inpatient
setting a person needs to be readmitted, admission should be available.
2. Rehabilitation has an early focus on participation: Impairment and activity
restrictions should be assessed and interventions planned for in the context of an
individual’s participation goals (World Health Organization, 2002).
3. A person’s strengths, needs and wishes are acknowledged: Rehabilitation should
not be focused solely on deficits.
4. The majority of the rehabilitation process, where appropriate, should occur in
the community context.
5. Rehabilitation is a cycle which involves four key components: assessment,
planning, intervention and evaluation: Assessments need to be specific to the
rehabilitation approach taken. Planning needs to involve collaborative goal
setting. Intervention should target collaborative goals, and evaluation should
target the intervention that takes place. Ongoing rehabilitation involves further
iterations of this cycle.
As stated above, adults with TBI progress through different stages at different rates.
Many adults with moderate to severe impairments require all four stages, but others may not require lengthy hospital-based rehabilitation following their acute care and may pass straight to services in the community. Foster and colleagues (2000, 2003, 2004) have completed multiple studies in an attempt to ascertain why some adults with TBI are referred to particular services following their acute care while others are not. Discussion of their research is now presented.
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3.2.3 Reasons for Referral to TBI Rehabilitation
Foster, Fleming, Tilse and Rosenman (2000) conducted an initial retrospective analysis of 61 medical records of adults with TBI from two Australian hospitals, one a metropolitan hospital and the other a large regional hospital. Their aim was to describe the types of care allocated at the end of the acute care stage of adults with TBI and to identify factors associated with variations in referral to care. Predictor variables examined were based on previous research, and included the age of the adult at the time of TBI, the severity of the injury, and treatment variables (i.e., place of acute care treatment, review by a rehabilitation physician, and range of medical or allied health practitioners involved in the care). The types of care examined following discharge from acute care included inpatient rehabilitation, outpatient rehabilitation and no rehabilitation.
The results of this study indicated that although 61% of adults with TBI were referred to rehabilitation, 33% of these were referred for outpatient services. Place of treatment and age contributed to group differences in treatment and were useful in separating the inpatient rehabilitation, outpatient rehabilitation and no rehabilitation groups.
Review by a rehabilitation physician while in acute care was also associated with referral to inpatient rehabilitation.
To build on these findings, Foster and Tilse (2003) developed a conceptual model to help explain patterns in TBI service referral following adults’ acute care stage. They based the model on their previous research, a comprehensive literature review, and application of social problems theory. The social problems theory was used by Foster and Tilse as a framework for explaining the complexities and dynamic nature of referral for services following TBI. This theory views an adult’s TBI as a social condition, and TBI is viewed holistically as a burden on society and a threat to the social order. Furthermore, this theory
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proposes that the impairments exhibited by people with TBI are both socially constructed and socially created. These impairments are considered to arise largely as a result of the medical paradigm.
Using this theory as a framework for practice, the proposed model explains patterns in post-acute referral based on three core components: characteristics of the individual with
TBI, activities of the health care professional, and the contexts of care. Discussion of these components follows.
• Characteristics of the adult with TBI: These include clinical and non-clinical
factors. Clinical factors relevant to referral include initial TBI severity and degree of
secondary impairments, whereas non-clinical characteristics reflect the clinician’s
perceived social identity and value of the individual within society (e.g., age,
family, place of residence).
• Activities of the health care professional: These involve consideration of the
interpretive processes health professionals go through when reviewing client
information before determining whether a referral will be made. Use of this model
implies that it is the role of the health professional to incorporate both the
characteristics of adults with TBI and the contexts of their care in service referral
decisions.
• The contexts of care: These include both the organisational and health care contexts.
The organisational context is defined as the characteristics of the initial acute care
hospital. Characteristics of these services which may encourage referrals include
acute services with onsite rehabilitation units and the availability and involvement
of health professionals in a client’s care. Characteristics within the health care
context which require consideration before referrals are made include consideration - 90 -
of external resources (e.g., the availability of services and the relationships between
health professionals and services available) and the policy context.
This model was refined following further investigation by Foster, Tilse and Fleming in 2004. In this subsequent study, Foster et al. interviewed 18 health professionals and observed 10 team meetings to further examine the factors influencing referral to rehabilitation following TBI. The aim of the 2004 study was to refine the conceptual model described above to focus on practitioners and the process of decision making. This study took place within two acute public hospitals in Australia. The results indicated that post- acute referrals were largely determined by three components: characteristics of the individual with TBI; health professionals and processes of referral; and contexts of care.
However, in the conceptual model, the authors further refined the factors within these components. See Figure 3.2 for a summary.
The findings from the 2004 study indicated that decisions regarding referrals were influenced primarily by health professionals’ selection and interpretation of clients’ clinical and non-clinical factors. Clinical factors considered in referral decisions included the individual’s functional and tracheostomy status, time since injury, age, family, place of residence and indigenous status. Justification for referral decisions also included client rate and extent of progress, recovery potential, safety and burden of care, potential for independence and capacity to cope. Apart from client characteristics, factors relating to organisational pressures and resource constraints were also considered to shape referral (see
Figure 3.2).
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Figure 3.2 Foster, Tilse and Fleming’s (2004) Model for Understanding Health Professionals’ Processes of Referral
Healthcare environment
• Resource deficiencies across the continuum of care • Lack of rehabilitation services, including allied health in rural and remote areas • Lack of knowledge of resources • Efficiency of resource use
• Value for money
Organisational context
• Multidisciplinary processes • Allied health contribution • Variability in practitioner involvement
• Presence/absence of advocacy • Pressure on acute care and inpatient rehabilitation beds
Individual with TBI Post hospital care • Interpretation Functional status referral • Tracheostomy status • Rate/extent of progress • Inpatient
• Time since injury • Recovery potential rehabilitation • Age • Safety/burden of care • Non-inpatient
• Family • Potential for independence rehabilitation • Place of residence • Capacity to cope • No rehabilitation • Indigenous status
The body of research conducted by Foster and colleagues (2000, 2003, 2004) investigating patterns in TBI referral to services for adults with TBI following their acute care has important implications for clinical practice. The results from their preliminary research indicated that post-acute referral practices emerged from practitioners’ interpretations of clinical and non-clinical client factors, which were in turn constrained and shaped by the dynamics of the organisational and broader health care contexts. However, it
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is important to note that this research used in-depth qualitative study, focusing on the decision making in two Australian acute hospitals. Therefore, the transferability of its findings is limited. In addition, this research did not consider the views or roles of adults with TBI or their family members in decision making regarding their need or want for further services following acute care. This is an important area to consider, because unless the needs of consumers match the characteristics of services provided, the services will not be utilised, regardless of referrals (Humphreys & Mathews-Cowey, 1997). Further research is needed to examine the experiences and views of adults with TBI and their significant others when reflecting on the care they received and their reasons for engaging in services.
In a changing health care environment, with growing cost considerations and scarce resources, both practitioners and informed consumers need to be involved in determining the allocation of care. Such involvement ensures that services referred will be more likely to be accessed, engaged with and valued. A brief history of TBI rehabilitation and the evolution of services through time is presented next.
3.2.3 History of TBI Rehabilitation
TBI rehabilitation is still a relatively young field. Even though behavioural and personality disturbances following TBI were acknowledged as early as the 1860s (Boake,
1989), rehabilitation was not considered and severe brain injuries were usually fatal (Muir
Giles, 1994). It was not until the twentieth century that major advances in TBI rehabilitation occurred. This time period coincided with the First and Second World Wars, which saw the neurosurgical treatment and rehabilitation of large numbers of injured servicemen who had returned from the front line (Muir Giles, 1994). Rehabilitation centres
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were set up to meet the needs of the servicemen. However, after the conclusion of the wars, the TBI rehabilitation centres were not continued.
Nevertheless, the number of injured servicemen during this time inspired many early TBI neurosurgeons and researchers worldwide, including Kurt Goldstein from
Germany, Ritchie Russell in the UK, and Alexander Luria in the Soviet Union (Muir Giles,
1994). It was these pioneers who developed new ways of thinking about the brain’s function and its possible rehabilitation.
This increasing interest in brain injury occurred around the same time as the increased incidence of brain injuries in the general public resulting from road trauma, and thus began the second wave of attention to TBI rehabilitation (Muir Giles, 1994). Around the same time, comprehensive rehabilitation centres were set up in Israel to attempt to meet the needs of servicemen who had sustained head injuries as a result of the 1973 Yom
Kippur War. These centres were a collaborative effort between the Israeli defence ministry and the New York University Institute of Rehabilitation Medicine (Boake, 1989; Muir
Giles, 1994). Additional projects occurring around this time included the beginning of the
Center for Comprehensive Services for TBI which opened in Illinois in 1977, the opening of a day rehabilitation program at New York University in 1978 and the establishment of the Kemsley unit, a specialised unit for behavioural impairments following TBI, in 1979 in the UK (Muir Giles, 1994).
Despite these initial attempts to establish comprehensive rehabilitation programs, their primary focus was cognitive rehabilitation, and little attempt was made to rehabilitate adults with TBI to real-world tasks (Muir Giles, 1994). Furthermore, it was not until the early 1980s that rehabilitation centres began to consider clients’ learning capacity, a factor which is now considered essential for functional rehabilitation success.
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In the mid-1980s, researchers investigating TBI rehabilitation began to advocate for functional skills retraining (Squire, 1986). It was at this time that people with severe TBI were shown to be able to undertake significant learning in functional tasks despite profound cognitive deficits. Since then, the concepts of new learning and functional skills retraining have been applied and developed worldwide (Muir Giles, 1994).
In addition, the mid-1980s saw the introduction of community-oriented rehabilitation services, in the form of transitional living centres (Muir Giles, 1994). These centres were designed to assist adults with TBI with their transition from hospital to the community. Their primary focus was to continue rehabilitation in a community setting, while maximising clients’ skills in social and interpersonal relationships. For many clinicians, this was considered the end of rehabilitation, and it was not until the early 1990s that the effectiveness of long-term rehabilitation for the increasing number of survivors with severe TBI was recognised (Jackson, 1994). Thus brain injury rehabilitation, which had been virtually non-existent in the 1970s, was in demand in the 1980s, as a growing number of survivors of TBI required long-term care. This demand for services remains today.
3.3 Clinical Care Guidelines
3.3.1 The Development of Clinical Care Guidelines
As shown above, many methods of TBI practice developed as a result of clinical experience (e.g., initial neurosurgery techniques were developed through the treatment of wartime veterans). Therefore, as clinical experience increased, the treatment for people with traumatic brain injuries evolved. This change occurred alongside other factors such as association lobbying, government recognition, extra funding and clinical pressure, and has
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eventually resulted in the development of clinical care guidelines to assist to standardise practice.
Until recently, the development of TBI practice standards was derived from group consensus (Maas et al., 1997). This meant that a group of TBI experts would gather and share their experiences and expertise and eventually agree on the best course of care.
However, in the last decade, a new form of practice standards has evolved, referred to as evidence-based or clinical care standards. Evidence-based standards differ from practice standards in that they involve the use of research to identify the most appropriate and effective interventions for different TBI impairments (Brain Trauma Foundation, 2008b).
According to Leyfer and Cleary-Holdford (2009) and Hudson (2009), evidence- based practice involves the integration of a systematic search for and appraisal of the most relevant research, in combination with a health professional’s clinical expertise and a client’s preferences and values, to answer clinical questions. The main aim of evidence- based practice is to obtain the best possible outcome for a client by selecting interventions which have the greatest chance of success (Leufer & Cleary-Holdforth, 2009).
TBI evidence-based guidelines, otherwise referred to as clinical care guidelines, are
“systematically developed statements devised to assist practitioners’ and clients’ decisions about appropriate healthcare for specific clinical circumstances”(Field & Lohr, 1990, p.
99). Their successful implementation should improve quality of care by decreasing inappropriate variation and expediting the application of effective advances in everyday clinical practice (Cabana et al., 1999).
There are several clinical care standards or guidelines that now reportedly define best practice in TBI. Examples of these include:
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• “Guidelines for the surgical management of traumatic brain injury” (2006),
“Guidelines for the management of severe traumatic brain injury” (2007), and
“Guidelines for pre-hospital management of severe traumatic brain injury” (2008),
all devised by the American Association of Neurological Surgeons and the
Congress of Neurological Surgeons in association with the Brain Trauma
Foundation (Brain Trauma Foundation, 2006, 2007, 2008a),
• “Traumatic brain injury: Diagnosis, acute management and rehabilitation” (2006),
devised by the New Zealand Guidelines Group on behalf of the Accident
Rehabilitation and Compensation Insurance Corporation and the National Health
Committee in New Zealand (Accident Rehabilitation and Compensation Insurance
Corporation & National Health Committee, 2006),
• “Multidisciplinary rehabilitation for acquired brain injury in adults of working age”
(2005), devised by the Cochrane Collaboration (Turner-Stokes , Disler, Nair &
Wade, 2005),
• “Clinical practice guidelines for the care of people living with traumatic brain injury
in the community” (2004) (Trevena, Cameron, & Porwal, 2004) and “Guidelines for
mild traumatic brain injury following closed head injury: Acute/post acute
assessment and management” (2008), both funded by the Motor Accident Authority
of Australia (Motor Accident Authority NSW, 2008),
• “Adult trauma clinical practice guidelines: Initial management of closed head injury
in adults” (2006), devised by the New South Wales Institute of Trauma and Head
Injury Management (Institute of Trauma and Health Injury Management, 2006),
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• “Rehabilitation following acquired brain injury: National clinical guidelines”
(2003), devised by the British Society of Rehabilitation Medicine and the Royal
College of Physicians (British Society of Rehabilitation Medicine & Royal College
of Physicians, 2003),
• “Guidelines for the management of severe head injury in adults” (1997), devised by
the European Brain Injury Consortium (Maas et al., 1997), and
• “Head injury: Triage, assessment, investigation and early management of head
injury in infants, children and adults” (2007), devised by the UK’s National Institute
for Clinical Excellence (2007).
A summary of the contents of these eleven guidelines, including their aims, targeted client type, outcomes and methods of creation, is provided in Table 3.1.
3.3.2 Critique of Guidelines
Although they are beneficial in their potential to improve the quality of health services by assisting clinicians in decision making about the management of adults with
TBI based on research evidence, clinical care guidelines should not be used uncritically, for they are not always methodologically sound. For example, the EBIC guidelines are based solely on expert opinion and consensus (Frattali et al., 2003). Before using guideline recommendations, clinicians need to understand the methodology used to create them. The strength of a recommendation is said to be dependent on the method used for the literature review. As stated in the introductory chapter of this thesis, a common misconception exists among health professionals that guidelines pertain only to the results of randomised control trials (RCT) (Turkstra & Kennedy, 2008). However, Maas (2002) argued that the results of
RCTs are not enough. Guidelines should be based on the integration of RCT, high quality - 98 -
Table 3.1 Description of clinical care guidelines for adults with TBI
EBP guidelines Client type Outcomes Method of creation Comments
Multidisciplinary People with ABI Strong evidence to suggest that: Literature search of Cochrane These guidelines are rehabilitation for (from any cause) aged - adults with mild ABI make good recovery with provision Central Register of Controlled based on ABI acquired brain injury 16-65 years of appropriate information, without additional specific Trials, MEDLINE, EMBASE, research outcomes, in adults of working intervention. CINHAL, PsycLIT, AMED, not specific TBI age – Cochrane Aim: To assess the - more intensive rehabilitation programs are associated with the national research register studies. Collaboration (2005) effects of a earlier functional gains for those with moderate-severe ABI. and ISI Science Citation Index. multidisciplinary rehabilitation Moderate evidence to suggest that: Literature reviewed included following ABI in - continued outpatient therapy can help to sustain post-acute randomised controlled trials adults and to explore rehabilitation gains following moderate-severe ABI. (RCT), quasi-randomised and approaches that are quasi-experimental designs. effective in different Limited evidence to suggest that: settings and the - specialist in-patient rehabilitation and specialist multi- outcomes that are disciplinary community rehabilitation may provide affected additional functional gains.
Initial management Adults with mild, Mild TBI: The literature reviewed People with of closed head injury moderate or severe - Defined condition according to NHMRC (1999) penetrating head in adults – Institute TBI - Specified clinically important complications levels of evidence (i.e., Level I injuries were of Trauma and - Specified how patients should be assessed – systematic review of RCTs; excluded from this Injury Management Aim: Formulate - Identified which patients require CT scans and what to do Level II – RCT; Level III – study as their acute (2007) recommendations on with “high risk” patients when CT scans are unavailable. pseudo-RCT, etc.) care management the initial acute varies. management of adults Moderate–severe TBI: Literature search: MEDLINE, following TBI - Defined proven acute treatments EMBASE, Cochrane Database Focused purely on - Defined when patients should be transferred to acute of Systematic Reviews (CDSR) acute care medical hospitals with neurosurgical facilities and the Cochrane Library. management
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
TBI: Diagnosis, Guidelines applied to - Clear definition of TBI Literature was graded using the system These guidelines acute any New Zealand - Clear description of severity levels for TBI detailed in the Handbook for the were based not only management and resident who - Description of who should be admitted in emergency preparation of explicit evidence-based on epidemiological rehabilitation – sustained a TBI department clinical practice guidelines studies. Where no New Zealand - Recommendations about who should receive CT (NZGG,2001). Levels of evidence were evidence was Guidelines Group TBI broadly defined scans rated as available, but (2008) as an injury to the - Recommendations about when it is safe to discharge - strong (study met all or most of the guidance was brain resulting from adults, children and young people from acute care validity criteria) needed, externally inflicted - Description of the types of rehabilitation services - fair (not all validity criteria were met, recommendations trauma available for people with TBI but the study was not influenced by were developed - Recommendations about organisation of bias) through systematic rehabilitation services and approaches to rehabilitation - weak (very few of the validity criteria group consensus - Recommendations about which interventions for were met). based on the people with TBI are appropriate Informed by the International experience of the Classification of Functioning, guideline Disability and Health (ICF) (World development team. Health Organization, 2001). Clinical practice Adults with TBI Evidence from guidelines grouped into five categories: Literature searched included Targeted to inform guidelines for the residing in the - common health issues in TBI (e.g., seizures, somatic MEDLINE, Health Star, PsychInfo, the practice of GPs care of people community following complaints, post-concussive syndrome) CINAHL, EMBASE, SPORTS discuss, in the community. living with TBI in resident rehabilitation - mental healthcare needed (e.g., depression, anxiety, CDSR, American College of the community – schizophrenia) Physicians Journal Club, Database of Largely recommends Motor Accident Aim: Summarise the - cognitive and behavioural sequelae (e.g., cognitive Reviews and Abstracts of pharmacological Authority (MAA, best available impairment, personality and behaviour changes) Effectiveness, and Cochrane Control interventions; little 2004) evidence about the - lifestyle issues and quality of life (e.g., functional Trail Register. Strength of evidence of attention paid to
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longer term care of status, issues for carers, friends and family) literature reviewed was based on non-medical people with TBI - substance abuse. NHMRC criteria. interventions
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
Guidelines for mild Guidelines target Provides recommendations to clinicians in three Developed following review of No TBI following adults (>16 years) practice areas: international guidelines for mild TBI, recommendations closed head injury: with mild TBI during - pre-hospital together with a systematic review for mild penetrating Acute/post-acute the first 6 months - emergency departments and appraisal of literature. TBI. assessment and following closed head - general practice management – MAA injury Literature was appraised using the (2008) In the domains of assessment and diagnosis, NHMRC criteria. Aim: Improve early management and prognosis identification and Informed by the ICF. management of mild TBI
Guidelines for the Guidelines target Provides recommendations for treatment from Guidelines based on consensus and EBIC is an management of acute management of accident site to the intensive care unit, including: expert opinion. organisation of more severe head injury in adults following - early management of head injury than 100 European adults – European severe TBI - referral policy and admission care in neurotrauma centres committed to Brain Injury centres research targeted to Consortium (EBIC, Aims: improve the - transportation improving the 1997) outcome of people - ICU care. outcome of patients with TBI by with head injury. optimising resources and organisation Does not consider research reviewing severe TBI outcomes following specific forms of acute management.
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
Rehabilitation Guidelines target Provide recommendations in eight areas, including: Guidelines were based on pre- Guidelines were following ABI: adults, primarily of - principles and organisation of services (e.g., the existing reviews of ABI care and pre- proposed to be National clinical working age, with provision of specialist services, staffing levels to meet existing guidelines. A Cochrane reviewed at 3 yearly guidelines – BSRM ABI of any cause demands of intensive treatment, coordinating Systematic Review was also used intervals. However, & RCP (2003) (including trauma) services) and a systematic search of literature they are yet to be - approaches to rehabilitation (i.e., teamwork and on brain injury rehabilitation was reviewed. Aim: provide communication, assessment and outcomes) undertaken. Databases searched guidance regarding - involvement of carers and families in care,- early included:Medline, EMBASE, AMED Based on ABI the general principles discharge and transition to rehabilitation services and CINAHL. rehabilitation, not of service provision - inpatient clinical care, preventing secondary specifically TBI. and specific advice on complications in severe brain injury (e.g., optimising Literature was critiqued according to the clinical respiratory functioning, swallowing management, own classification of levels of management of people nutrition and hydration, bladder and bowel, prolonged evidence (i.e., Ia – meta-analysis of with ABI coma, seizures, etc.) RCT; Ib – RCT; IIa – well designed - rehabilitation setting and transition phases (i.e., control study; IIb – quasi- referral, assessment and review) experimental design, etc.) - rehabilitation interventions (e.g., continence, motor function and control, sensory disturbance, cognitive, In areas where gaps in literature were emotional and behavioural management) identified, guidelines were based on - continuing care and support (e.g., joint health and expert opinion and consensus-based social service provision). documents.
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
Guidelines for the Aim: present rigorous literature- Provide recommendations Literature used in the formation Only focuses on lesions which surgical based recommendations for the regarding surgical management of these guidelines was reviewed develop within 10 days of injury. management of surgical management of people of: according to the author’s own Therefore guidelines do not cover TBI – American with posttraumatic intracranial - acute epidural hematoma scale (i.e., Class 1 evidence – conditions such as subdural Association of mass lesions - acute subdural hematoma RCT; Class II – nonrandomised hematomas which take longer to Neurological - traumatic parenchymal lesions cohort studies, RCT with design develop. Guidelines refer only to Surgeons and the - posterior fossa mass lesions flaws; case-control studies; Class people who have sustained closed Congress of - depressed cranial fractures. III – case series/expert opinion). head injuries. Neurological No recommendations made in Surgeons (AANS these guidelines at the level of & CNS, 2006) Class I evidence (i.e., RCT).
Guidelines for pre- Guidelines target adults and Provide recommendations Guidelines were formulated Created specifically for hospital children who have sustained a regarding pre-hospital according to current evidence emergency medical staff (i.e., management of severe TBI (as measured by a management, including: base. paramedics). TBI – AANS & GCS of 3-8) - assessment of oxygenation and CNS (2007) blood pressure Literature was critiqued according Medically based. Aim: To clearly delineate the - use of GCS to Association specific “level of current scientific basis for - use of pupil examination evidence scale” (i.e., Class 1 emergency medical services’ pre- - airway, ventilation and evidence – RCT; Class II – hospital practice in managing oxygenation treatment nonrandomised cohort studies, people with severe TBI - fluid restriction treatment RCT with design flaws; case- - cerebral herniation as a control studies; Class III – case treatment technique series/expert opinion) - hospital transport conditions.
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
Guidelines for the Target audience: adults with Comprised of 15 topics: Used own classification system to Initially published in 1995, management of severe TBI classified by a GCS of - Blood pressure and oxygenation assess the value of therapies or reviewed in 2000 and again in severe TBI – Brain 3-8, acute phase only - Hyperosmolar therapy interventions (i.e., Class I – RCT; 2007. Trauma - Prophylactic hypothermia Class II - observational studies, Foundation, AANS Aim: to clearly articulate the - Infection prophylaxis, cohort studies, prevalence studies Do not consider all aspects of & CNS (2007) current scientific basis for clinical - Deep vein thrombosis and case control studies; Class III acute management for adults with practice when working with prophylaxis – case reviews, case reports, severe TBI. Also exclude studies adults with severe TBI - Indications for intracranial expert opinion, etc.). with participants with multiple pressure monitoring pathologies. - Intracranial pressure monitoring Studies were reviewed in terms of technology design and quality. - Intracranial pressure thresholds - Cerebral perfusion thresholds - Brain oxygen monitoring and thresholds - Anaesthetics, analgesics and sedatives - Nutrition - Antiseizure prophylaxis - Hyperventilation - Steroids.
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Table 3.1 cont.
EBP guidelines Client type Outcomes Method of creation Comments
Head injury: Audience targeted: all people Provides recommendations for the Classification of evidence was Does not address the Triage, assessment, aged over 1 year of age who care provided by primary care, based on the Oxford Centre for rehabilitation or long-term care of investigation and sustain a head injury, defined in ambulance and emergency Evidence-based Medicine Levels people with TBI. early management this context as any trauma to the department staff, including: of Evidence (May, 2001). of head injury in head - assessment and pre-hospital Guidelines were initially infants, children management Databases searched include published in 2003, and were then and adults - Aim: offer best practice in the - transfer to hospital MEDLINE, EMBASE, the updated in 2006 and 2007. National Institute assessment, investigation and - assessment and investigation in Cochrane Library, Health for Clinical early management of head injury. the emergency department Technology Assessment Excellence (2007) - admission to sub-acute care Database, National Health System - transfer to neuroscience unit Economic Evaluations Database, - discharge to the community of System for Information on Grey people following head injury. Literature in Europe and the Health Management Information Consortium.
Consensus for all recommendations (even those based on level 1 evidence) was also sought to ensure guidelines were “taken up” once devised.
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clinical research, which may or may not involve randomisation, caregiver experience, and client preferences.
Turkstra and Kennedy (2008) and Ylvisaker et al. (2002) supported that assertion by Maas (2002), particularly in relation to TBI guidelines. They argued that
RCTs by nature reduce variation in both the population sample under investigation and the intervention methodology being tested. RCTs often have stringent exclusion and inclusion criteria which yield a relatively homogeneous sample. Individuals with TBI, however, are a heterogeneous group, with co-morbid conditions, such as behavioural and/or psychiatric impairments, that often exclude them from group studies.
Given the heterogeneous nature of the population of adults with TBI, complete standardisation of treatment through literal interpretation of clinical care guidelines is impractical and inappropriate to meet individual clients’ needs. In all conditions, particularly TBI, client groups differ, and “in the real world, all interventions differ and each intervention delivered to an individual differs in some way from others considered instances of the same protocol” (Ylvisaker et al., 2002). Therefore, guidelines in TBI rehabilitation should never take the form of statements stringently defining the delivery of clinical services. They should be a guide based on a common core approach to rehabilitation (Maas et al., 1997).
The guidelines summarised in Table 3.1 were formed in the UK, the USA,
Australia and New Zealand. Each targets a slightly different stage of the continuum of care provided to adults following TBI. One targets the pre-hospital care of adults with
TBI, six target the acute stage, one targets the non-residential or community-based stage of rehabilitation, another targets recommendations for multidisciplinary rehabilitation across all stages, and the final two guidelines target the entire continuum of care to which adults should have access following TBI. As the aim of this research is to investigate the continuum of care experienced by adults with TBI and their families,
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only two guidelines, those which describe the entire continuum of care, namely
“Rehabilitation following acquired brain injury: National clinical guidelines” (British
Society of Rehabilitation Medicine & Royal College of Physicians, 2003) and
“Traumatic brain injury: Diagnosis, acute management and rehabilitation” guidelines
(New Zealand Guidelines Group, 2006), are referred to throughout the remainder of this thesis. These two are now discussed in detail.
3.3.1.1 British TBI clinical care guidelines
The British clinical care guidelines were developed by a multidisciplinary working party convened by the British Society of Rehabilitation Medicine and were published in collaboration with the Royal College of Physicians in 2003. They were written to complement the National Institute for Clinical Excellence (NICE, 2007) guidelines, which have since been updated. The NICE guidelines focus on head injury management in the first 48 hours following ABI. The British guidelines follow on from these, addressing the medium- to long-term needs of adults with ABI and their family members.
The population group covered in these guidelines is inclusive of all causes of
ABI. However, specific mention and inclusion is made of the TBI population. This is unlike the Australian head injury clinical care guidelines which specifically focus on
ABIs as a result of stroke (i.e., the National Stroke Guidelines (Stroke Foundation,
2007).
The British clinical guidelines encompass general principles of service provision in addition to specific recommendations for the clinical management of adults with
ABI. These recommendations include optimising respiratory function; management of swallowing impairments; maintaining adequate nutrition and hydration; positioning and handling; effective bladder and bowel management; establishing basic communication;
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managing epileptic seizures; emerging from coma and PTA; prolonged coma and vegetative states; promoting continence; motor function and control; sensory disturbance; communication and language interventions; cognitive, emotional and behavioural management; optimising performance on daily living tasks; leisure and recreation; computers and assistive technology; driving; and vocational and educational rehabilitation.
These guidelines, although comprehensive, are limited by the fact that they were published six years ago. Guideline development should be a continuous process, particularly as rehabilitation following TBI is a field of rapid change and development.
According to the BSRM and the RCP (2003) these guidelines “should have been reviewed and updated at three year intervals” (p. 6). However, they have not yet been updated.
3.3.1.2 New Zealand TBI Clinical Care Guidelines
A more recent guideline documenting best practice in TBI diagnosis, acute management and rehabilitation was published by the New Zealand Guidelines Group in
2006. Unlike the British guideline, these guidelines focus specifically on TBI management for all people, including children, young people and adults. The aim of these guidelines is to support practitioners’ decision making about acute management, care and rehabilitative approaches when working with people with TBI, their families and carers.
These guidelines make recommendations regarding pre-hospital assessment, management and referral to acute care including pre-hospital management; administration of GCS, LOC and PTA scales; management of neurological signs and treatment of bleeding disorders. Acute stage recommendations are made regarding appropriate assessments in the emergency department, primary investigations, including
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the use of CT and MRI, as well as the use of corticosteroids. For persons referred to rehabilitation, the interventions recommended include physical rehabilitation, intervention for motor control and function, continence, sensory impairments, communication and language rehabilitation, cognitive rehabilitation, psychosocial and behavioural rehabilitation, optimising performance in daily living tasks, vocational rehabilitation, sexuality, and leisure and recreation. Specific recommendations around the management of specific TBI groups such as those who sustained a mild TBI, those of indigenous ethnicity, and infants are also addressed. The needs of carers are also acknowledged.
The New Zealand TBI guideline is anecdotally the most frequently used clinical care guideline for the management of TBI in Victoria. This guideline is therefore the most frequently cited in this thesis, as the research reported in this thesis was conducted in Victoria. The following section of this chapter provides a brief critique of the use of guidelines in TBI management.
3.3.3 Current Service Utilisation Patterns and Outcomes
Clinical care guidelines were initially created to assist health professionals’ decision making regarding client assessment and management. However, they have recently been adopted by insurance companies and lawyers who use current international guidelines as directives which in all instances should be followed (Maas,
2002). For example, in the USA, many state health plans and private insurance companies will not cover the costs associated with cognitive rehabilitation, given the lack of “good evidence’”(i.e., RCT) which demonstrates its efficacy (Turkstra &
Kennedy, 2008).
Several studies have been conducted in the USA to measure the implementation of acute care guidelines formulated by the Brain Trauma Foundation (Bulger et al.,
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2002; Fakhry, Trask, Waller, & Watts, 2004; McIlvoy et al., 2001). These studies have identified that adherence to acute care protocols based on guidelines has resulted in reduced client mortality, reduced length of stay of clients in the acute stage of their care and hospital cost savings due to reduced length of stay. In one particular USA study
(Faul et al., 2007), cost savings to be achieved if treatment guidelines were used routinely were estimated to be as high as $262 million in annual medical costs, $43 million in annual rehabilitation costs and $3.84 billion in lifetime societal costs.
Although these cost savings resulting from the routine implementation of clinical care guidelines appear impressive, the ability of Australian services, especially those in rural areas, to comply with these guidelines is unknown, particularly in light of the well documented challenges to rural practice. These challenges have been shown to impact upon the availability of rural health services as well as consumers’ abilities to access services if provided. Challenges identified include lack of transport options, lack of continuity of services, attrition of healthcare professionals, travelling long distances to access services, social stigma, and lack of privacy (Petty, Rapley, & Bramstom,
2002; Whiteneck, Gerhard, & Cusick, 2004). The following section of this chapter investigates the issues of access and equity in TBI service provision.
In addition to the consideration of service availability and challenges to rural practice, Ylvisaker et al. (2002) proposed other costs and benefits which clinicians need to consider before implementing the recommendations from clinical care guidelines.
According to Ylvisaker et al. (2000), costs in terms of time, effort and emotional investment of adults with TBI and their family should be considered. Possible creation of unrealistic expectations also require consideration. Benefits of implementing the recommendations are said to include not only changes in client outcome but also reduced caregiver burden, increased knowledge and competence, and heightened sense
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of competence and control within the adult with TBI, family members and everyday support people.
For example, in TBI rehabilitation, clinicians, adults with TBI and their significant others often need to decide between alternative interventions. They may need to choose between a remedial or an impairment oriented intervention (e.g., verbal dyspraxia drills). An impairment oriented intervention may have a good chance of success and a major effect if effective. That is, a reduction in impairment would improve an adult’s activity and participation. However, this approach may be moderately labour- and resource-intensive and may not be designed to result in changes in the competence of everyday people in the person’s life.
This approach contrasts with a participation oriented intervention, such as the implementation of a communication device targeted to assist communication of an adult with verbal dyspraxia upon return to work, with associated environmental modification and employer training. This approach may have a moderate chance of success, with a moderate effect if effective. It is labour intensive but is designed to make a lasting change in the everyday people in the person’s life.
In deciding between these two approaches, clinicians, the adults with TBI and their families need to consider both the costs and benefits associated with each treatment, alongside the evidence for the treatments’ effectiveness. Given considerations of service availability, the challenges of rural practice, and the costs and benefits associated with guideline implementation, care needs to be taken that achieving best practice according to the guidelines does not become the ultimate or only goal of health professionals, departments, services, insurance bodies and lawyers. Clinical care guidelines should never be considered the sole influence in facilitating a client’s best outcome following TBI.
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Practice in TBI rehabilitation has undergone major changes over the past 50 years. These changes have required significant redefinitions of practice for health professionals in their work with adults with TBI. Clinical care guidelines have been formulated to direct services. These guidelines, once based on statements arising from group consensus, have progressed to summaries of the best available literature on efficient and effective TBI treatment techniques. The implementation of the guidelines internationally has resulted in decreasing lengths of hospital admissions, improved client mortality and charge reductions per client per hospital length of stay. However, the effect of guideline implementation on the continuum of care experienced by adults with moderate to severe TBI in Australia is currently unknown. More research is required to describe the adequacy of the continuum of care experienced by adults with moderate to severe TBI in Australia following the construction and implementation of
TBI rehabilitative guidelines. The following section of this chapter reviews current TBI service provision patterns while considering issues of access to and equity of TBI services in Australia.
3.4 Healthcare Provision in Australia
According to the Australian Centre for Policy Development, Australia is among the healthiest of the Organisation for Economic Co-operation and Development
(OECD) countries (McAuley & Menadue, 2007). Most indicators for life expectancy and morbidity in Australia continue to show improvement. Similarly, many lifestyle indicators are positive. For example, few countries have rates of smoking as low as
Australia (McAuley & Menadue, 2007). Road fatalities and crashes (resulting in TBI), although still higher than in some other countries, are also on a downward trend in
Australia (McAuley & Menadue, 2007).
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Moreover, Australia appears to have kept health-related costs under control. In
2007, Australia’s gross domestic product for healthcare spending sat at 9.7 percent, near the OECD average, and well below the USA figure of 15 percent. In terms of workforce to population ratio, Australia is also better supplied with medical practitioners and nurses than the USA, Canada and New Zealand (McAuley & Menadue, 2007).
Regardless of these positive trends, substantial pressures and demands on the
Australian healthcare system are evident (see Table 3.2). These demands include a growing and ageing population base, changing availability of informal carers and volunteers, increasing cultural diversity, changing way of life, advances in technology, more active consumers, expectations of continued clinical quality, increasing popularity of complementary therapies, rising incidence of chronic illness, new diseases, persistent health inequities, shortfalls in health workforce, complex Commonwealth and State funding arrangements, an increasing private health sector, and rising health costs. A summary of these changing demands on the Australian healthcare system is provided in
Table 3.2.
When a health service is unable to balance systemic changes with changes in demands, inequity may result (Whitehead, 1990). Persistent patterns of health inequity exist in Australia (New South Wales Government, 2007). Groups who have been shown to be more likely to experience difficulty accessing health services and to show poorer health outcomes include indigenous people and those from rural and remote communities, as well as those with a mental health disorder, sensory, physical or intellectual disabilities, people from different cultural or linguistic backgrounds
(including refugees), prisoners, and homeless people (New South Wales Government,
2007). However, before describing health inequity, and more specifically inequities in
TBI service provision, characteristics of an equitable health system must be considered.
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3.5 Equity in Health
In 1984, the 32 member states of the World Health Organization (WHO) and the
European Union met to discuss 38 targets for a common health policy. The first of these targets was defining the concept of equity. When discussing this target, the WHO defined an equitable health system as one in which “ideally everyone should have a fair opportunity to attain their full health potential and, more pragmatically, that no one should be disadvantaged from achieving this potential” (Whitehead, 1990, p. 9). They stipulated that equity in health is not about eliminating all health differences so that everyone has the same level of health, but rather about reducing health differences which result from factors that are considered both avoidable and unfair (New South
Wales Government, 2007). According to the WHO, equity is based on three guiding principles:
(a) that services be available to all people who choose to access them,
(b) that people have equal access to the services provided, and
(c) that the level and the quality of the services provided is consistent, regardless of
a person’s social location (i.e. ethnicity, gender, age or race) (Whitehead, 1990).
These guiding principles are based on the premise that a service is (a) available, (b) accessible and (c) of consistent quality. Further discussion of these three concepts follows.
3.5.1 Availability
For a service to be equitable, it must first be available. However, for a service to be available, it needs to have adequate resources (i.e., funding, staff, infrastructure, etc.) allocated to ensure that it is created and maintained. As shown in Table 3.2, the allocation of funds for health services in Australia is complex, providing scope for
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Table 3.2 Changing demands on Australian Healthcare
Changing demand Description Source
A growing population Increasing numbers of residents will place additional pressure on the already stressed health system. (New South Wales Government, 2007; Australian Bureau of Statistics, 2009)
An ageing population The increasing proportion of older people will significantly change the demand profile for health (New South Wales Government, and other human services. 2007; Australian Bureau of Statistics, 2009)
Ageing informal carers and Growth in the informal workforce is projected to be less than the anticipated increase in demand for (New South Wales Government, volunteers home-based support. 2007)
Increasing cultural diversity There will continue to be a diverse blend of cultures and languages within Australia which will (New South Wales Government, lessen or increase, depending on changes in migration patterns through time. 2007; Australian Bureau of Statistics, 2009)
Changing way of life Changes in the Australian way of life include increasing female participation in the workforce, (New South Wales Government, increasing number of single parent families, rising population density in metropolitan areas, and 2007) increasing stress levels. The changes will affect not only the way Australians live but also how they deliver health services.
Advances in technology driving Advances in medical technology will continue to expand the range of options for preventing, (New South Wales Government, changes in clinical practice and diagnosing and treating illnesses. These new possibilities alongside increasing media coverage will 2007) delivery continue to fuel people’s expectations about what a health service can and should provide.
More active consumer The roles of consumers and providers are undergoing change. Many health consumers and members (New South Wales Government, involvement of the community are demonstrating a growing interest and confidence in playing a more active role 2007; WHO & Commission on in planning not only for their own healthcare but for the health services of their community. This Social Determinants of Health, explosion in the amount of available health knowledge will have a significant impact not only on the 2008) way medicine is practised but also on the skills required by health professionals.
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Table 3.2 cont.
Changing demand Description References
Continuing expectation for Consumers will continue to expect that healthcare is safe and that they will be assured of quality and (New South Wales Government, clinical quality and client improved outcomes. 2007) safety Rising levels of chronic Lifestyle changes along with the ageing population and significant improvements in survival rates from (New South Wales Government, illnesses heart attacks, brain injuries, and cancers are contributing to a growing number of people with chronic 2007) physical and mental health conditions. New diseases In the last 20 years, approximately one new communicable disease in humans is identified each year. (New South Wales Government, The rise in antibiotic-resistant bacterial infections also poses a challenge. 2007; WHO & Commission on Social Determinants of Health, 2008) Persistent health inequities The overall health status of Australians has steadily improved. However, a distinct gap remains between (New South Wales Government, groups with the best and the poorest health. Aboriginal people have a life expectancy 20 years less than 2007; Centre for Policy non-indigenous people, and rural residents have a shorter life expectancy than their urban counterparts. Development, 2007) Shortfalls and misdistribution The numbers of healthcare providers is not consistent with demand. Reasons for this include (New South Wales Government, of health providers proportionally fewer students commencing and completing health courses, an ageing workforce with a 2007; Centre for Policy number of clinicians reaching retirement, health services needing to compete for workers in a tightening Development, 2007) general labour market, and changing expectations of work (e.g., more flexible work hours and shorter working weeks). Varying Commonwealth and The split in roles and responsibilities for the funding, regulation and provision of health services is (New South Wales Government, State responsibilities complex, providing scope for service gaps, overlaps and poor coordination. 2007; Centre for Policy Development, 2007) Expanding private health The private health sector has expanded in the last decade, supported by taxpayer-subsidised private (New South Wales Government, sector health insurance arrangements. 2007; Centre for Policy Development, 2007) Rising costs of healthcare Healthcare costs are growing more quickly than general economic growth. Strong consumer demand (New South Wales Government, and expectations for health services, together with technological advances in healthcare, drive health 2007) spending.
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service gaps, overlaps and poor coordination as a result of the various Commonwealth and
State government funding responsibilities (New South Wales Government, 2007).
Beauchamp and Childress (2009) stated that decisions regarding resource allocation typically occur on four levels. Initially, a comprehensive national budget is set, the funds of which are distributed across areas such as health, education, defence, and roads. Once the funds are distributed and the health budget is allocated, funds need to be split between public (e.g., health promotion activities) and individual (e.g., treatment) healthcare needs.
This budget is then further divided to determine which individual groups will receive funds for services. Groups are prioritised depending on a number of factors including, but not exclusively, the prevalence of diseases and disabling conditions, costs of treatments, pain and suffering incurred by individuals with the disease or disability, and impact of length and quality of life (Body, 2009). Once funds are made available to different client groups
(e.g., those with brain injury vs. those with fractured limbs), treatment decisions are then made at an individual level.
Campbell, Gillet and Jones (2001) and Beauchamp and Childress (2009) have outlined a number of principles on which fair distribution of resources could be based.
These include allocating resources to people according to equal share, need, effort, contribution to society, merit, and free market exchange. When considering the healthcare needs of adults with TBI, only the first two concepts seem acceptable. As was shown in
Chapter 2, common lifestyle consequences of a moderate to severe TBI include unemployment, marital breakdown, social isolation, loss of pre-injury roles and reduced independence (Avesani, Salvi, Rigoli, & Gambini, 2005; Fearnside & Gurka, 1997; Khan,
Baguley & Cameron, 2003). Therefore, adults with moderate to severe TBI may struggle to
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claim a share of healthcare services according to effort, contribution to society, merit and free market exchange.
This leaves the allocation of resources for adults with TBI according to equal share or need. Allocating resources such as TBI rehabilitation according to equal share ignores the fact that some people have greater need then others. Allocating resources according to equal share is particularly difficult in planning TBI service provision, as adults with TBI are heterogeneous by nature. Different people require different services, depending on their degree of impairment and different stages of recovery (New Zealand Guidelines Group,
2006).
This leaves the allocation of healthcare resources according to need. The needs as expressed by Australian adults with TBI and their significant others are currently unknown.
Further research is required in this area to ensure that resources are allocated effectively so that health services are available to those that need them.
3.5.2 Accessibility
Once a service is available, it needs to be accessible to be considered equitable.
Accessibility is difficult to assess in terms of a health service, because the term “access” is not well defined (Penchansky & William Thomas, 1981). To resolve this problem, seminal research designed to define the concept of access was conducted by Penchansky and
William Thomas (1981). They surveyed 287 consumers and as a result defined “access” as a general concept that encompasses a set of more specific components that either permit or prohibit a consumer from utilising healthcare services. These components include:
• The number and types of services available,
• How easily reached these services are in relation to the location of the consumer, - 119 -
• The consumer’s perceptions of these services’ appropriateness to meet his/her
needs,
• How expensive the services are and the consumer’s ability to pay, and
• Whether the consumer’s personal attitudes are compatible with the service.
For an available health service to be utilised by the public, there must be a fit between the characteristics of the services provided and the beliefs and expectations of the consumers. The impact of rurality and allocated funding on service accessibility and utilisation is further discussed in Sections 3.6 and 3.7.
3.5.3 Consistent Quality
Consumers (New South Wales Government, 2007) and the WHO (1990) stipulate that as well as being available and accessible, a service must provide consistent quality in order to be equitable. According to the New South Wales Government (2007), one of the most effective strategies for ensuring consistent quality among health services both nationally and internationally is through the formation, maintenance and implementation of evidence-based clinical care guidelines (see Section 3.3).
3.5.4 Inequity in Health
In contrast to equity, the term “inequity” is defined by Whitehead (1990) to describe unfairness. For a health service to be classified as inequitable, it must be examined and judged to be unfair and unjust in the context of provision to the rest of society (Whitehead,
1990). Many authors have identified examples of inequity in healthcare, both within
Australia and around the world (e.g., Bent, 1999; Bourke, 2001; Brownlea & McDonald,
1981; Coleman, Thompson-Smith, Pruitt, & Richards, 1999; Hill, 1994; Hodgson, 1991; - 120 -
Keen, 1999; National Rural Health Policy Forum, 1999; Penchansky & William Thomas,
1981; Strasser, Harvey, & Burley, 1994; Streeper, 1991; Wilson, Lincoln, & Onslow,
2002). Sources of inequity include the inability of consumers to access health services, the provision of inadequate service delivery options, restrictive health policies, and problems with the recruitment and retention of health professionals.
In the context of this thesis, inequity could arise if an adult with TBI was unable to access a service required because the service was either unavailable, the person did not meet the eligibility criteria or was not referred, or if the service accessed was of lower quality than services accessed by the TBI population as a whole. Research has indicated that one of the main causes of TBI service inequity is geographical isolation (Health
Department of Victoria, 1991; Kelly & Headway, 1999; Newberry, 2001). A discussion of geographical isolation as it relates to inequity is now provided.
3.6 Rural Health
The health inequities experienced by those living in rural areas have been internationally recognised (Humphreys & Rolley, 1993; Murphy, 2004; Newberry, 2001;
Sample & Darragh, 1998). According to the National Rural Health Policy Forum and
National Rural Health Alliance for the Australian Health Ministers’ Conference (1999), those living in rural areas of Australia have significantly poorer health outcomes in some areas compared to Australia as a whole, and compared to urban areas in particular. Rural and remote populations have also been shown to spend more time in hospital for some causes of ill health (Welch, 2000). Rates of death by injury, road trauma, asthma, diabetes and infant mortality are also notably higher in rural than in urban areas (Welch, 2000).
Higher death rates are recorded for non-indigenous men in rural and remote areas (Welch,
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2000) and rates of injury are also significantly different, with deaths per 100,000 of population rising from 53 in capital cities to 108.5 in remote zones (Australian Institute of
Health and Welfare, 1998). Overall, the rates of death and injury increase with increasing remoteness, suggesting that those living in rural and remote zones are at greater risk of death from injury than those living in urban areas (Australian Institute of Health and
Welfare, 1998; Welch, 2000).
The factors responsible for the differences in health outcomes between rural and urban areas have been extensively documented in the literature. They include reduced socioeconomic status, less experienced primary healthcare providers, reduced availability of diagnostic technology, reduced proximity to specialty care, reduced transport options to travel to specialty care, reduced availability of healthcare providers, and reduced levels of awareness of health issues and access to health related information (Bourke, 2001; Murphy,
2004; Strasser, Harvey, & Burley 1994).
Economic barriers influencing public policy formation have also been documented as a cause of the differential health outcomes in rural versus urban centres. Fiscal restraint has resulted in the inequitable provision of services to rural and remote communities
(Human Rights and Equal Opportunity Commission, 1999; Mooney, 1997).
3.6.1 TBI Service Provision in Rural Areas
The inequities of access to TBI rehabilitation, particularly for those residing outside metropolitan areas, have been studied internationally (Foster, Tilse, & Fleming, 2004;
Murphy, 2004; Newberry, 2001; Sample & Darragh, 1998). A review and critique of this research as it pertains to this study follows.
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Johnstone, Nossaman, Shopp, Holmquist and Rupright (2002) conducted a comparative study of services and supports available to TBI patients in Missouri to investigate the issue of health differentials dependent on patients’ degree of rurality. They found that fewer than 20% of the state’s rehabilitation professionals practised in rural regions, where one third of the state’s population resided. Moreover, they found that only
13 of the state’s 33 outpatient facilities were located in rural regions, requiring many rural patients to travel long distances to access basic rehabilitation. Finally, Johnstone et al. found that, of the TBI support groups operating in Missouri, only 17% were located in rural areas.
In another USA -based study, Schootman and Fourtes (1999) identified similar population-based, rural versus urban differences in TBI care. Schootman and Fourtes used a postal survey to examine potential differences in functional status and services received by adults residing in rural and urban counties of Iowa. They mailed the survey to 909 Iowa residents who had sustained a TBI during July-December 1996. Their questionnaire sought data on the background of the adults with TBI, their development of secondary conditions, their use of alcohol, level of functioning, mobility, health insurances, inability to see a doctor because of cost, services received, and services that should have been received. A total of 444 usable surveys were returned. Of the surveys returned, the response rate was noted to increase with the severity of the TBI and degree of rurality.
As a result of this survey, it was noted that residents of counties with fewer than 100 people per square mile were more than twice as likely to be dependent and be in poorer health at the time of the survey then those who resided in counties with 100 or more residents per square mile. Furthermore, those who did not receive rehabilitation services but
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perceived a need for them were twice as likely to report being in poorer health than those who did not perceive a need for such services (Schotman & Fourtes, 1999).
From this international research, it might be thought that adults with TBI in the
USA who reside outside of metropolitan centres have access to fewer rehabilitation services and support groups (Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002). Muus,
Cogan, Offutt and Medalen (2006) investigated this issue in an attempt to delineate the barriers to accessing health and social services among adults with TBI. They hypothesised that the geographical location of residence, ethnicity and functional limitations of adults with TBI would be the main barriers to access. A convenience sample of 117 North
Dakotans with TBI were asked to complete a questionnaire that solicited information such as demographics, nature of TBI, service needs and perceived barriers to accessing health and social services.
The results showed that the most commonly cited barriers to accessing and using health and social services were shortages of strong TBI advocates, inadequate knowledge of services available for adults with TBI, no centralised source for TBI information, inadequate financial resources, and lack of individualisation of TBI services. In terms of geographical location, rural respondents cited long travel distances as a barrier to accessing services. By race, indigenous Americans were more likely to cite lack of transportation and inadequate support from family members as obstacles (Muus et al., 2006). The following section of this thesis reviews the outcomes for people with TBI who live in rural areas of
Australia.
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3.6.2 TBI Service Provision in Australia
Australia’s vast distances between its centralised, specialist care centres have resulted in questionable equity of access to appropriate acute and rehabilitation services.
Considerable debate continues in the literature surrounding the perceived inequities of healthcare experienced by rural TBI clients compared to those living in metropolitan areas.
According to the Victorian Head Injury Impact Project (1991), Newberry (2001) and Kelly and Headway (1993), TBI health services in Australia were centralised in metropolitan and large regional centres, meaning that country residents with moderate to severe TBI were usually transferred to metropolitan trauma centres for specialist care. Furthermore, their access to services on discharge was often severely limited (Fagen, 1996; Health
Department of Victoria, 1991; Honey & McCubbery, 1991; Newberry, 2001). Inequities listed in the literature which affect Australian TBI rural services are recorded in Table 3.3.
Interestingly, a more recent Australian study completed by Harradine, Winstanley,
Tate, Cameron, Bagukey and Harris (2004) reported contrasting findings to those cited in international studies (Johnstone et al., 2002; Muus et al., 2006; Schootman & Fourtes,
1999) for the outcomes of adults with TBI who resided in rural areas. According to
Harradine et al. (2004), no differences in injury severity, length of acute care stay and functional outcome, including return to work, were noted between rural and urban adults with TBI in New South Wales.
Harradine et. al. (2004) used this network of rehabilitation centres to conduct a longitudinal, prospective, multi-centre study of a 2-year cohort with follow-up at 18 months post-injury. Their main measures included a standardised questionnaire to collect
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Table 3.3 Inequities Affecting Australian TBI Service Provision
Inequities Affecting Australian TBI Service Provision References
Lack of community support services (Health Department of Victoria, 1991)
Few regionally based specialist rehabilitation programs (Health Department of Victoria, 1991; Harradine, Winstanley, Tate, Cameron, Baguley, & Harris, 2004; Sample, Tomter, & Johns, 2007)
Poor levels of community awareness (Health Department of Victoria, 1991)
Problematic recruitment and retention of suitably qualified (Harradine, Winstanley, Tate, Cameron, health professionals to manage the complexities of TBI Baguley, & Harris, 2004)
Lack of access to appropriate respite options (MacPhail, 1998)
Lack of community, age-appropriate recreational supports (Honey & McCubbery 1991)
Lack of regular TBI-specific social groups (MacPhail, 1998)
Insufficient options for service delivery (Kelly & Headway, 1999)
Few appropriate long-term options for accommodation (MacPhail, 1998)
Long distances to travel to access specialist services (Harradine, Winstanley, Tate, Cameron, Baguley, & Harris, 2004)
Limited access to clinical psychiatric and psychology (Harradine, Winstanley, Tate, Cameron, services Baguley, & Harris, 2004)
demographic and injury details, and five previously validated scales. These scales were the
Disability Rating Scale (Rappaport, Hall, Hopkins, & Belleza, 1982) Mayo-Portland
Adaptability Inventory (Bruce, Peter, Patricia, & Nancy, 2006), Sydney Psychosocial
Reintegration Scale (Kuipers, Kendall, Fleming, & Tate, 2004) Medical Outcomes Study
(Rejas, Ribera, Ruiz, & Masrramón, 2007), and the General Health Questionnaire (Sarkova et al., 2006). One hundred and ninety eight adults with TBI participated in this study, 147 of whom came from urban areas.
No statistically significant differences were found in this study between urban and rural patients with regard to their demographic details, injury severity, acute care length of
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stay, and functional outcome. However, a significant difference was noted in the types of rehabilitation urban versus rural TBI patients accessed, with 53% of rural patients being treated in non-inpatient settings compared to 33% of urban patients (Harradine et al., 2004).
Although these results suggest inequities in availability of inpatient rehabilitation, outcomes for rural patients appear not to have been compromised.
Caution needs to be exercised when looking at these results, as the disparate sample sizes between urban and rural participants (i.e., 147 urban participants versus 51 rural participants) significantly increases the risk of type two error. In addition, the BIRPs were a network unique to New South Wales, limiting the generalisation of these results to other
Australian states. Furthermore, it is rural TBI clients who did not receive a referral to a
BIRP who might be said to have received inequitable treatment, and they were not included in the study.
Similar outcomes between rural and urban populations despite the type of rehabilitation provided might be related to the fact that rehabilitation in a community setting is considered a moderator of quality of life after TBI (Harradine et al., 2004).
Moreover, living in a rural area is also associated with greater openness to seeking social support and a better quality of life compared with living in an urban area (Farmer, Clark, &
Sherman, 2003). These factors might have impacted upon the outcomes of rural adults with
TBI who reported similar levels of recovery to those in urban areas, despite their limited access to services.
Although Harradine et. al. (2004) found no statistical difference in urban versus rural TBI outcomes, they acknowledged the challenges that occurred for adults with TBI who reside in rural areas. These challenges included the fact that TBI patients must be transferred to urban inpatient settings if they needed to access services, spending many
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months away from their homes. During this time, an adult’s social support and interpersonal relationships may dwindle, making community integration following discharge from formal services more difficult.
Appropriate accommodation, social support and financial assistance for carers upon patient discharge become important issues, and with the majority of TBI patients in NSW being non-compensable, their reliance on limited government-funded schemes such as the
Isolated Patient Transport and Accommodation Assistance Scheme (New South Wales
Health, 2009b), Program for Appliances for Disabled People (New South Wales Health,
2009a), and Home and Community Care Services (Department of Health and Ageing,
2001) is critical (Harradine et al., 2004).
Other challenges described by Harradine et. al. (2004) in the Australian context reflected those described by Murphy (2004) in her analysis of urban versus rural service challenges in the care of American TBI patients. These challenges included problematic recruitment and retention of health professionals, limited skill base of rural health professionals in managing the complexities of TBI, inability to sustain large medical centres with specialist TBI care in rural areas, long distances to travel to access specialist services, and the lack of professionals in rural hospitals to offer rehabilitation which, as stated in clinical care guidelines, reduces hospital length of stay and improves outcomes, leaving rural patients dependent on carers and government assistance (Murphy, 2004).
The challenges identified by Harradine et al. (2004) and Murphy (2004) show that limited improvement has occurred in TBI service provision compared to the results of the
Victorian Head Injury Impact project published 13 years prior. The Victorian Head Injury
Impact project was a joint initiative of the Health Department Victoria (HDV), Community
Services Victoria and the Transport Accident Commission (TAC). Its aims were threefold:
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to count the number of Victorians with a TBI, while also identifying their service needs and developing a strategic plan for the future of TBI services in Victoria (Health Department of
Victoria, 1991).
The project was overseen by TBI experts, who formed an executive committee, with input from a planning advisory group and an issues sub-committee. Over 18 hospitals, government departments, advocate bodies and insurance companies provided input into the project. Funding and substantial administrative support for the project was provided by the
HDV (Health Department of Victoria, 1991).
The results of the project indicated the need for improvement at every level of TBI care. These improvements included increasing
• staff training in TBI management in acute care,
• information and practical support (i.e., travel and accommodation) available to
families in the acute stage,
• referrals to specialist rehabilitation while reducing the centralisation of specialist
services in Melbourne,
• the provision of greater accommodation options for young people following
TBI,
• age appropriate respite care services available to families who live with and care
for people with TBI,
• equitability of service provision and long-term support options between
compensable and non-compensable people with TBI,
• coordination between health, educational and vocational services to help people
with TBI transition back to school and employment,
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• the availability of vocational rehabilitation services, and
• the level of community awareness to help facilitate the reintegration of people
with TBI (Health Department of Victoria, 1991).
The literature reviewed above suggests that as of 3 years ago, access and provision of services for people with TBI continued to be influenced in part by the degree of rurality of an adult’s home town (see, e.g. Foster, Fleming, Tilse, & Rosenman, (2004); Harradine et al., (2004); Johnstone et al., (2002); Muus et al., (2006)). There appear to be little data describing service provision for TBI since then.
3.7 Funding Models
Access and services provision for adults with TBI seem to be influenced by location. However, this does not appear to be the only factor affecting service allocation.
The funding model allocated to TBI survivors to pay for their care also appears to influence their ability to access services.
In Australia, the healthcare costs associated with TBI are subsidised by one of three funding models: compensable funding, private funding or public funding. Like many
Western countries (e.g., the UK and Canada), the bulk of Australian acute, rehabilitation and long term care following TBI is publicly funded. This section details the three funding models.
3.7.1 Public Funding
Public funding involves the allocation of monies generated from tax revenue or other State and Federal government sources to health services to pay for the provision of healthcare. However, one of the difficulties inherent in this type of funding is that - 130 -
Australian health systems have fixed budgets and policies of fiscal constraint, which mean that public health services invest their money in health programs which attempt to serve as many people as they can within the confines of their budget (Gray, 2000). For example, programs targeting diabetes and obesity prevention may receive more funds than TBI rehabilitation given the greater incidence of these conditions. This is concerning, given the immediate intensive rehabilitative needs of TBI survivors (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; New Zealand Guidelines Group, 2006) and the long-term economic, social and care costs associated with inadequate servicing of the
TBI population (Gray, 2000).
Moreover, health services have fixed budgets with rationalised service allocation.
This has resulted in health services such as specialist TBI rehabilitation being centralised to large regional and metropolitan centres, to enable them to be used by greater numbers of people (Brownlea & McDonald, 1981). Consequently, specialist health services in small regional towns have diminished (Humphreys & Rolley, 1991).
3.7.2 Private or Compensable Funding
Alternatively, TBI survivors might receive services paid for by private or compensable funds. In Victoria, compensable clients can be funded through the Transport
Accident Commission (TAC) or by WorkCover. Compensation by definition is provided, in this case monetarily, to recompense the impairments suffered by an adult with a TBI. TAC, which funds the care costs associated with most Victorian TBIs, has a no-fault accident compensation system. TAC provides funding for “all hospital, medical and rehabilitation costs relating to the injury, and perhaps of greatest significance as far as families are concerned, ongoing attendant care support, home help, transportation to therapy, supported
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work trials and integration support and/or tutoring for students, etc. As a consequence, families are relatively well supported financially and in terms of access to rehabilitation and a range of ongoing practical supports, potentially reducing the need for long-term role changes in the family” (Ponsford et al., 2003, p. 3).
Private clients, however, receive services which are paid for by their private health insurance. Therefore, the services they receive are constrained by their level of insurance and the number of “extras” they invested in before their accident. The two main forms of private cover in Australia are hospital cover and extras cover. It is possible to hold both.
Hospital cover varies according to a person’s private health fund. Overall, hospital cover entitles people to choose the hospital they want to be admitted to for their medical care. The private fund will often meet the costs associated with their stay. However, some insurance funds limit the choice of hospital to which a person can be admitted. They may also offer cost reductions only, and the gap between charges and coverage needs to be self-funded by the person with the insurance (iSelect, 2009b).
The level of extras cover provided also varies according to a person’s private health fund. Typically, extras cover includes dental treatment, chiropractic treatment, home nursing, allied health services, optometry, prosthetics and other ancillary services. The range of benefits offered within extras cover varies widely between funds and is also dependent on the level of cover taken out by the person with insurance (iSelect, 2009a).
Once TBI survivors have used up their allocated private healthcare funds they become a public patient in a public hospital or other public centre and their continuing services are paid for by public funds. Expert opinion (Gray, 2000) suggests that different funding models result in inequitable TBI service provision, as those publicly funded or those without specific privately funded extras are largely responsible for funding their own
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care once discharged from hospital. This is expensive for TBI survivors and their families, as seen in the Papastrat (1992) study in which the lifetime long-term chronic care costs for a non-independent severely brain injured survivor were calculated to be approximately $US
9 million.
The Victorian Head Injury Impact Project (1991) suggested variations in access to services depending on the level of funding allocated to the adult with TBI to pay for their care. Sixteen years ago, the HDV et al. (1991) acknowledged that compensable clients were better served and had more options than adults with TBI not covered by some form of compensation, especially with regard to accommodation and long-term support. At that time, recommendations were made to improve the equity of access to rehabilitation, regardless of compensation (see Section 3.6.2, p. 123). Nevertheless, national and international publications, anecdotal report and clinical experience suggest that little has changed (Gray, 2000; Newberry, 2001).
3.8 Summary
For a person who sustains a moderate to severe TBI, life changes forever. Such people sustain irreversible physical, emotional, behavioural and cognitive impairments which may make them unrecognisable to family and friends. Impairments secondary to an adult’s TBI may include motor function impairments; memory impairments; problems with planning, sequencing or organisation; reduced insight and frustration; language impairments; and apathy or reduced motivation (Avesani, Salvi, Rigoli, & Gambini, 2005;
Fearnside & Gurka, 1997; Khan, Baguley, & Cameron, 2003). These impairments commonly result in lifestyle interruptions which reduce the degree of independence.
Common lifestyle interruptions include unemployment, difficulty maintaining interpersonal
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relationships, marital breakdown, family stress, and loss of pre-injury roles (Avesani, Salvi,
Rigoli, & Gambini, 2005; Fearnside & Gurka, 1997; Khan, Baguley, & Cameron, 2003;
Newberry, 2001). Prognostic indicators which have been identified to improve the outcome of adults with moderate to severe TBI include the severity of their injury (Katz &
Alexander, 1994), their age (Fleming, Tooth, Hassell, & Chan, 1999), employment status
(Bush et al., 2003; Novack, Bush, Meythaler, & Canupp, 2001), gender (Kaplan, 2001), level of cognition (Flemingham, Baguley, & Crooks, 2001), number of discharge restrictions (Durgin, 2000), self-efficacy (Dumont, Gervais, Fougeyrollas, & Bertrand,
2004) and participation in rehabilitation (Cicerone et al., 2004; Goranson et al., 2003;
Malec, 2001; Seale et al., 2002).
The detrimental impact of TBI affects not only the adult with TBI but also the family member who often takes on the role of primary carer once the person is discharged from residential rehabilitation. Relatives are often faced with the prospect of caring for a person very different from the one they knew before the trauma (Knight, Devereux &
Godfrey, 1998). Common caregiver reactions to caring include shock, depression, anxiety, disbelief, denial and frustration (Degeneffe, 2001). The process through which family members go when attempting to cope with, adapt to and provide care for the adult with TBI is challenging (Sinnakaruppan & Williams, 2001). International studies have identified the needs of carers during this time, which include the need for information, honesty, future care planning and respite (Sinnakaruppan & Williams, 2001; Stebbins & Leung, 1998). If the needs of carers are not met, carer burden is said to result.
Carer burden is a common negative reaction to the impact of providing care (Given,
Kozachik, Collins, Devoss, & Given, 2001). Burden is said to occur when an imbalance exists between the levels of care required relative to the caregivers’ personal time, social
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roles, physical and emotional states and financial resources (Sherwood, Given, Given, &
Von Eye, 2005). Those at greatest risk of carer burden include people caring for adults with severe traumatic brain injuries who are impaired on neurobehavioural measures
(Machamer, Tempkin, & Dikmen 2002; Marsh, Kersel, Havill, & Sleigh, 2002) and are functionally dependent (Sherwood, Given, Given, & Von Eye, 2005). Carers who are younger, with fewer years of education and less access to support resources are also more prone to carer burden (Nabors, Seacat & Rosenthal, 2002). Moderators of carer burden have been identified in the literature. These moderators are indicative of caregiver adjustment, and include access to external support (Ergh, Rappaport, Coleman, & Hanks,
2002), use of effective coping strategies (Wells, Dywan, & Dumas, 2005), positive appraisal (Harris, Godfrey, Partridge, & Knight, 2001) and degree of carer mastery (Hanks,
Rappaport, &Vangel, 2007).
The research summarised above demonstrates the devastating impact of a TBI on the person who sustains the injury and on the family, who often take on the role of primary carers once the person’s relative is discharged from formal services. However, many of these findings are based on studies undertaken in the USA, Canada and the UK Little is known about the impact of a TBI on adults and their family members in Australia.
As stated above, adults who have sustained a moderate to severe TBI require lifelong rehabilitation (Newberry, 2001). Clinical care guidelines have been formulated to help guide health professionals and adults with TBI through their rehabilitation. These guidelines are based on existing literature and advocate evidence-based practice (Brain
Trauma Foundation, 2008b). Current guidelines recommend initial acute care management, followed by intensive, specialised, residential rehabilitation; community-based context- specific therapy and life-long monitoring (British Society of Rehabilitation Medicine &
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Royal College of Physicians, 2003). A model summarising each stage of an adult’s continuum of care following a TBI was provided in Table 3.2.
Recommendations made in clinical care guidelines do not ensure that adults with moderate to severe TBI will be referred for suggested services. Research conducted by
Foster and her colleagues (2000, 2003, 2004) suggests that service referral patterns following the acute care of adults with TBI are dependent on practitioners’ interpretations of clinical and non-clinical client-related factors, which are in turn constrained and shaped by the dynamics of the organisational and broader healthcare contexts. This research, while important, is limited as it does not consider the involvement of adults with TBI and their family members in service planning and referral generation. Further research is needed to identify factors which adults with TBI feel impact upon their needs for services, and the barriers associated with access, before a model demonstrating practices in service referrals can be finalised.
One barrier in service referral and provision is the ability of health services in rural areas to meet service needs and comply with the standards set out in clinical care guidelines. To date, the scope of Australian rural healthcare services to provide this needed assistance has not been considered or evaluated. Despite the frequently documented barriers to rural health (e.g., Petty, Rapley, & Bramstom, 2002; Whiteneck, Gerhard, & Cusick,
2004) and well acknowledged rural versus urban health outcome inequities, few studies exist of TBI in rural areas. Of those, the majority have been completed in the USA (e.g.,
Johnstone, Nossaman, Schopp, Holmquist, & Rupright, 2002; Schootman & Fourtes,
1999).
One Australian study (Harradine et al., 2004) reported no differences in demographically matched patients’ functional outcomes following TBI in rural and urban
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areas of New South Wales (NSW). However, this study was completed in a unique set of
BIRPs located throughout NSW, and did not include patients who were excluded from services because of their rurality. In addition, disparate sample sizes between urban and rural participants significantly increased the risk of type two error, and this reduced the strength of the study’s findings. By contrast, national population-based studies have found rural versus urban differences in TBI outcomes (i.e., Johnstone, Nossaman, Schopp,
Holmquist, & Rupright, 2002; Schootman & Fourtes, 2000). The second study (Health
Department of Victoria, 1991) reviewing TBI service provision in Australia was completed
16 years ago. At that time, many improvements were recommended in each stage of the
TBI rehabilitation continuum of care. However, the outcome from implementation of the recommendations is currently unknown. Further research is needed in this area.
Varying funding models allocated to adults with TBI also appear to result in service inequities. In Australia, funding models include public, private and compensable funding schemes. Expert opinion suggests that access to TBI services varies according to funding
(Gray, 2000). However, initial research into this area is required.
3.9 Directions for Research
Based on the literature reviewed in the previous three chapters the following gaps in knowledge were identified:
1. The continuum of care experienced by adults with moderate to severe TBI in
Australia is currently unknown.
2. The preferences and needs of Australian adults with TBI and their families when
accessing healthcare services following their TBI are unknown.
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3. The views of adults with TBI and their families on the evaluation and allocation
of appropriate healthcare services following TBI are unknown.
4. The impact of rurality and allocated funding on the healthcare experiences of
adults with TBI and their family members are unknown.
Therefore, the following research was planned to address these gaps. A mixed methodology of qualitative and quantitative research was proposed in the state of Victoria, Australia, to describe the reported continuum of care experienced by adults with TBI and their families to investigate. Specific research questions were:
1. What is the reported continuum of care experienced by adults with TBI?
2. What is the recollected impact of home town location on the continuum of care
experienced by adults with TBI?
3. What is the recollected impact of healthcare funding on the continuum of care
experienced by adults with TBI?
4. What is the reported continuum of care recollected by significant others of adults
with TBI?
5. What is the recollected impact of home town location on the continuum of care
experienced by the significant others of people with TBI?
6. What are other reported factors that influence the continuum of care experienced
by adults with TBI and their significant others?
7. Do people with TBI and their significant others recollect receiving the same
services when reflecting on the care they received following head injury?
8. What factors affected the ability of people with TBI and their significant others to
access services following head injury?
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CHAPTER 4
METHODOLOGY
4.1 Introduction
This chapter describes the design and methodology used in this research and is presented in seven main sections: the research paradigm, approach, design, ethical considerations relevant to the research, participant selection and recruitment, data analysis methods and scientific rigor. The aim of this research was to investigate the continuum of care experienced by Victorian adults with moderate to severe TBI and their families. The research questions this study aimed to answer were:
1. What is the reported continuum of care experienced by adults with TBI?
2. What is the recollected impact of home town location on the continuum of care
experienced by adults?
3. What is the recollected impact of healthcare funding on the continuum of care
experienced by adults?
4. What is the reported continuum of care recollected by significant others of
adults with TBI?
5. What is the recollected impact of home town location on the continuum of care
experienced by the significant others of people with TBI?
6. What are other reported factors that influence the continuum of care experienced
by adults with TBI and their significant others?
7. Do people with TBI and their significant others recollect receiving the same
services when reflecting on the care they received following head injury?
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8. What factors affect the ability of people with TBI and their significant others to
access services following head injury?
The study was conducted in two stages, using two different data collection tools.
Each section of this chapter presents relevant information for both stages of the study. The first stage involved the use of two state-wide questionnaires and the second involved interviews. These research tools (questionnaires and interviews) were chosen to reveal different dimensions of the experiences of adults with TBI and their families throughout their healthcare journey. The aim of the use of two methods meant that the shortcomings of each were compensated for and the findings generated from the study were triangulated and viewed from several vantage points (Minichiello, Aroni, Timewell, & Alexander, 1995).
4.2 Research Paradigm
The paradigm within which a researcher chooses to work is important as it encompasses a basic set of assumptions and ways of researching (Rothman, Hedrick,
Bulcroft, Kickam, & Rubenstein, 1991). The paradigm chosen signals to other researchers and readers that a researcher has adopted a particular methodological and theoretical approach which will influence what s/he is trying to do in the research (Minichiello, Fulton,
& Sullivan, 1999). This section of this chapter discusses the research paradigm I worked within when collecting and analysing data.
According to Minichiello, Aroni, Timewell, and Alexander (2000), research can be broadly divided into one of two research paradigms: quantitative or qualitative. These paradigms are inherently different. Quantitative research, also known as positivist research, is concerned with discovering the facts about social phenomena. It assumes that reality is fixed and therefore measurable. Data are collected through measurable units and are
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analysed through numerical comparisons and statistical independence. Statistical analyses are then reported and interpreted (Hughes, 2003).
Qualitative, or interpretive, research is concerned with the understanding of human behaviour from participants’ perspectives. Qualitative research assumes that reality is dynamic and can therefore be negotiated by participants as they experience it. In the qualitative paradigm, it is accepted that there are multiple understandings and constructions of truth and knowledge, based on people’s opinions and the cultural and social context of their experience (Hughes & Black, 1999). Data are collected through participant observation or unstructured interviews and are analysed through themes from participant description. The data are then often reported in stories in participants’ own words
(Minichiello, Fulton, & Sullivan 1999).
According to Higgs and Cant (1998), the prime concern of qualitative research relates to the examination of the human experience. Therefore, research which aims to explore and gain a better understanding of human phenomena, such as the personal experience of adults with a TBI and their significant others throughout their healthcare journey, requires an element of qualitative research.
4.2.1 Mixed Methods
The paradigm within which my research was conducted involved both qualitative and quantitative elements, as the questions under investigation in this study called for a mixed methods approach. As a methodology, mixed methods research involves philosophical assumptions that guide the direction of the collection and analysis of data using a mixture of interpretive and positivist paradigms in many phases of the research process (Creswell & Plano Clark, 2007). For example, my study was conducted in two
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stages, using different data sources and data collection methods to explore the continuum of care experienced by adults with moderate to severe TBI and their significant others. In this study the quantitative paradigm was adopted to investigate how and to what extent a large number of Victorian adults and their significant others accessed healthcare following the onset of TBI. The qualitative paradigm was then adopted to gain a deeper understanding of the experiences, actions and beliefs of a smaller subset of adults with TBI and their significant others. Another aim was to explore the foundations of some of the reported beliefs, experiences and practices gathered from the quantitative stage of the study. The use of the mixed methods approach in my research was therefore adopted for the purposes of
“expansion”, in that the breadth of inquiry was increased, and “complementarity”, in that the use of qualitative methods helped to explain and elaborate data collected from the first quantitative stage (Greene, Caracelli, & Graham, 1989).
As a design, mixed methods approaches focus on collecting, analysing and mixing both positivist and interpretive data in a single study. The central premise in a mixed methods approach is that the use of quantitative and qualitative paradigms in combination provides a better understanding of research problems than the use of either approach alone
(Creswell & Plano Clark, 2007; Hanson, Creswell, Plano Clark, Petska, & Creswell, 2005).
The strengths identified by Creswell and Plano Clark and by Hanson et al. of utilising both paradigms for this research are summarised in Table 4.1.
4.3 Research Approach
Four major types of mixed methods designs can be implemented within a study to answer a research question. These include the triangulation design, the embedded design,
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the explanatory design and the exploratory design (Creswell & Plano Clark, 2007). For the purpose of this research, a triangulation design was implemented.
Table 4.1 Strengths of Using a Mixed Methods Approach in This Study
Strengths of mixed methods design Ways I used these strengths
Provides benefits that offset the The use of both positivist and interpretive paradigms weaknesses of single research designs in this study allows:
o identification of general trends in access to TBI healthcare (i.e., questionnaire)
o provision of an interpretive voice to speak on behalf and also to explain the positivist data (i.e., interviews)
o the ability to further probe topics/data initially identified within a positivist paradigm, using interpretive methods.
Provides more comprehensive By using different data collection tools from the evidence when studying a single positivist and interpretive paradigms (i.e., research problem questionnaires and interviews) I could view the research from multiple angles, encompassing varying parties’ views (i.e., people with TBI and their significant others).
Helps answer questions that cannot be The research questions targeted in this study call for answered by a single research design both positivist and interpretive paradigms. No single paradigm or data collection tool would be sufficient to achieve this study’s aims.
Encourages the use of multiple The data collected in this research were viewed by me paradigms to reflect on data rather free from the methodological and theoretical than typical alignments of certain influences which can at times constrain research when paradigms for positivist researchers operating solely within one paradigm. and others for interpretive researchers
The researcher is free to use all By working within both research paradigms, I was methods possible to address a research free to choose data collection methods which suited problem my topic of interest. For example, questionnaires were used for ease of access to participants given the state- (Creswell, & Plano Clark, 2007; wide nature of the project, whereas interviewing Hanson, Creswell, Plano Clark, allowed participants to speak without the constraints Petska, & Creswell, 2005) of structured questions or a choice of restricted, preconceived answers.
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4.3.1 Triangulation Approach
The triangulation approach is the best known approach used in mixed methods research (Creswell & Plano Clark, 2007). The purpose of this approach is to obtain different yet complementary data to best understand the research problem. Triangulation involves using multiple data collection methods, data sources, researchers or theories in order to increase the number of perspectives obtained about a phenomenon (Lincoln &
Guba, 1985). Liamputtong and Ezzy (2005, p. 41) noted that the advantage of triangulation is that it “allows the researcher to develop a complex picture of the phenomenon being studied, which might otherwise be unavailable if only one method were utilized”.
This study used data source triangulation (in that the perceptions of both adults with
TBI and their significant others were investigated) and methods triangulation (in that multiple methods – a survey and in-depth interviews – were used in the collection of data).
By using this design, the strengths and weaknesses of both sources (i.e., adults with TBI whose recollection might be impaired by cognitive communication/memory impairments and their significant others whose recollection may be affected by time delays, stress and heightened emotion) and methods (e.g., questionnaires involve a large sample size and identify general trends whereas interviews have a small sample size but allow for increasing detail and greater depth of understanding) of investigation were complemented and compensated for.
In this mixed methods design, interpretive and positivist paradigms were employed within the same time frame and with equal weighting. The data from each approach were collected and analysed separately before being merged in the interpretation. In this process, the data were transformed, facilitating the integration of the two data types in analysis
(Creswell & Plano Clark, 2007). There are four variations of the triangulation approach: the
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convergence model, the data transformation model, the validating quantitative data model and the multilevel model. The first two of these models differ in the way the data are merged, the third focuses on enhancing the results of a survey and the fourth is used to investigate different levels of analysis (Creswell & Plano Clark, 2007).
The convergence model was used for this research in order to compare the results of the questionnaires and interviews, to validate, confirm and corroborate the findings. The convergence model is the most traditional of the mixed methods triangulation designs
(Creswell & Plano Clark, 2007). Using this model, the researcher collects and analyses the qualitative and quantitative data separately before comparing and contrasting the different results during the interpretation. Like all the mixed method approaches, the convergence triangulation model has strengths and weaknesses, which I took into account when designing and implementing this research. The main strength associated with this approach is that the convergence approach maximises the strengths and minimises the weaknesses of a research design by operating within both positivist and interpretive paradigms while remaining efficient, as both data sets are collected in the same time-frame (Creswell &
Plano Clark, 2007). In this research project, the questionnaires were first disseminated. As they were returned, the participants who wanted to be further involved in the research were contacted and offered an interview. Interviews were conducted prior to and during the second round dissemination of questionnaires (see Section 4.3 for more detail). The weaknesses associated with this approach, and my response to manage the weaknesses specifically related to this study, are detailed in Table 4.2.
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Table 4.2 Weaknesses of the Convergence Model in Triangulation
Weakness My response to weakness
Considerable effort and expertise are required I completed this research as part of my Doctor of to implement and analyse many different Philosophy candidature. Therefore, I was dedicated to the qualitative and quantitative research tools. study of multiple research paradigms, approaches and designs. I also had access to my principal supervisors who had significant expertise in positive and interpretive paradigms.
A researcher may face difficulty if the Any conflicting results were discussed in the results and qualitative and quantitative results do not discussion chapters section of this thesis (see Chapters 5, agree. 6, 7, 8 & 9).
The strengths and weaknesses of the different The strengths and weaknesses of all paradigms, research designs need to be taken into approaches, designs and data collection tools were taken account when converging the two data sets into account from the inception of this research, as well as (i.e., different sample sizes, generalisations throughout data collection and analysis. vs. in-depth descriptions).
It can be challenging to merge two sets of Much study, reflection and discussion was undertaken very different data and their results in a before data sets were merged. meaningful way.
4.4 Study Design
The designs implemented in both stages of the study are now outlined in the order in which they were conducted. As stated above, the first stage of this research involved the dissemination of two state-wide questionnaires, and the second involved interviews, the results of which were merged within a triangulation approach.
4.4.1 Stage 1: Two Questionnaires
The first data collection tool utilised in this research involved the construction, completion and analysis of two postal questionnaires. A questionnaire is a document that contains a set of questions which have been specially formulated as a means of collecting information and surveying opinions on a specified subject (Dillman, 2002). In this case, two questionnaires were formulated, one targeting an adult with TBI and the second targeting the adult’s significant other, to investigate the perceptions and experiences of
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adults with TBI and their significant others when accessing the continuum of care following TBI.
Questionnaires are useful research tools as they yield a consistent, descriptive set of data on the topic under investigation (Gillham, 2000). However, their results often raise as many questions as they answer. Therefore, it was important that the results of the questionnaires used in this study were followed up with interviewing.
I decided to use questionnaires as the first tool in this research for a number of reasons. Questionnaires are low-cost in terms of time and money; they are an easy way to obtain information relatively quickly from a large sample of people; they are completed by participants at a time that suits them; they are easy to analyse, particularly closed-ended questions; they place less pressure on participants to provide immediate responses, giving them time to think about the questions they are being asked; participants can remain anonymous; interviewer bias is reduced; questions asked are standardised and they provide initial data that can be followed up and examined in more detail (Gillham, 2000; Jackson &
Furnham, 2000).
However, when choosing this tool, I also acknowledged the weaknesses of questionnaires as a data collection tool. Table 4.3 contains a summary of these weaknesses and a list of ways I accounted for them.
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Table 4.3 Weaknesses of Questionnaires as a Research Tool and Strategies Used to Minimise These
Negative features of Ways I overcame these weaknesses in the research presented in this questionnaires thesis
Questionnaires have a typically According to Gilham (2000), by using follow-up requests researchers low response rate. may increase the initial response rate by over a third. I initially aimed for a response rate of around 30%.
Questionnaires need to be brief The two questionnaires included in this study were long (i.e., 21 and 11 and relatively simple. pages in length). However, all items included in the questionnaire were researched in order to determine their purpose, necessity and accuracy, and were piloted to determine their content validity. Compound questions were avoided, as was jargon.
Participants’ misunderstandings The likelihood of misunderstandings cannot be entirely eliminated. cannot be corrected. However, I piloted questionnaires with TBI specialist staff and clients to correct all ambiguous or misleading questions.
Information obtained is Open-ended questions were included in both questionnaires. When restricted by the number and answering these questions, participants could respond without having to type of items included on the “tick a box” or provide a restricted answer. In addition, Stage 2 of the questionnaire. research followed up the results of the questionnaire through interviewing. This allowed participants to provide information they wished to convey.
Participants may have literacy Approximately 5% of the population of industrialised countries has problems. impaired literacy skills (Gillham, 2000). This percentage is likely to be increased in those who have a TBI (Isaki & Turkstra, 2000). To account for this I ensured that the questionnaires were simple and required minimal written responses. Moreover, participants were given the option of obtaining help from a significant other when completing the questionnaire.
Impossible to check the honesty I acknowledged that all answers provided on the questionnaires would of answers. not necessarily be “correct”, particularly in light of memory or recall difficulties associated with TBI (Fearnside, & Gurka, 1997; Khan, Baguley, & Cameron, 2003). However, participants were instructed to ask for help from their significant other if they had difficulty recalling events.
4.4.1.1 Research Tool
I devised both questionnaires used in this study drawing on my clinical experience, an extensive review of the literature, and consultation with specialist TBI services. Given the disordered literacy and communication skills of many people with TBI, the information sheet, questionnaire and follow-up letter were all written in easy-to-read English. Easy
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English uses simple terminology, large sized font and pictures to aid comprehension
(Disability Online, 2009).
All items in the questionnaire were researched to determine their purpose, necessity and accuracy, and were piloted to determine their content validity. The items in the questionnaire included neutral response categories and the same number of positive and negative categories. The questions had an appealing visual layout, were short in length, precise and accurate, and did not contain double negatives. These measures were taken to avoid bias and to simplify the participants’ task of answering questions (Dillman, 2002).
The first questionnaire targeting adults with TBI (see Appendix B), titled
“Investigating your experiences of healthcare – A survey for people who have a traumatic brain injury” consisted of five sections, “Acute medical care”, “Rehabilitation in hospital”,
“Leaving hospital based rehabilitation”, “Rehabilitation outside hospital” and “What are you doing now?”. It was made up of 69 questions distributed across 21 pages. A balance of questions with both closed- and open-ended forms were included as part of the questionnaires. Closed-ended questions were included given their appeal to participants as quick and easy to answer, with little time investment required (Richardson, 2009).
However, it is acknowledged that these types of questions restricted participants’ answers as they were required to choose a response to a question based on those I provided.
Therefore, open-ended questions were included in all sections to solicit additional information from participants in their own words.
The second questionnaire, targeting significant others (see Appendix C), was titled
“Investigating your experiences of healthcare – A survey for family members or significant others of a person with a traumatic brain injury” and also included five sections: “Acute medical care”, “Rehabilitation while in hospital”, “Leaving rehabilitation in the hospital”,
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“After discharge from hospital” and “Personal information”. It was made up of 52 questions distributed across 11 pages. The items included in this questionnaire took the same format as those included in the first.
All items included in these questionnaires were researched by me, and were pre- tested by pilot informants. Completion of the questionnaires by pilot informants took between 20 minutes and 2 hours, depending on the number of rest breaks taken.
Questionnaires were piloted firstly with allied health therapists working within specialised traumatic brain injury units (South West Brain Injury Rehabilitation Service [SWBIRS] and
Ivanhoe Private Hospital) and then with ex-SWBIRS and Ivanhoe TBI survivors and their families within their homes. Eleven pilot informants (6 adults with TBI and 5 significant others) were identified by allied health staff, who contacted them and sought their consent to be involved in a pilot project. If they agreed to be involved, the staff member passed informants’ contact details to me. I was present on all piloting occasions to receive feedback and to modify the questions as needed. The only modifications recommended by pilot informants involved clarifying the wording of questions. This piloting process was approved by Charles Sturt University’s Ethics in Human Research Committee (protocol
2007/071).
4.4.1.2 Procedure
Once piloted, both questionnaires (see Appendices B and C) and an information sheet (see Appendix D) were mailed to 1,771 adults with moderate-severe TBI as identified by the Royal Melbourne and Alfred acute trauma hospitals. Only adults with TBI, aged between 18 to 65 years, who had sustained their TBI between July 2001 and June 2005, were invited to take part in this study.
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The 1,771 participants invited to take part in this research were asked to return their questionnaires (via post) as soon as was convenient. As multiple contacts have been demonstrated to be the most effective strategy to increase participant response rates
(Dillman, 2002), a reminder notice was sent via post 4 weeks after the distribution of the questionnaire. Reminder notices were sent to only 1,271 clients2 admitted to the Alfred
Hospital for their acute care. The need for reminder notices (see Appendix E) was established as they have shown to be effective in increasing participant response rate
(Dillman, 2002). These reminder notices were accompanied by another copy of the questionnaire. The notices reiterated the importance of the study and thanked those who had already replied.
Self-administered questionnaires were returned via pre-paid envelopes sent out with the questionnaires. Return of the questionnaires was taken as an indication of voluntary consent to participate.
4.4.2 Stage 2: Interviews
The second data collection tool used in this research was interviewing, used to explore beneath the surface of data collected from the questionnaires with a select number of participants. With this method, participants could tell their stories in their own words, with minimal prompting from the interviewer (Bowling, 2002).
An interpretivist framework was used to guide data collection and analysis in this qualitative section of the study. Interpretivism is based on the premise that people continually and actively make sense of their life experiences within a cultural framework of
2 Reminder notes were not sent to the 500 Royal Melbourne Hospital (RMH) participants as the RMH ethics committee requested that an internal staff member provide a research “opt out” phone number for participants to contact should they not wish to participate in this research. At the time this research was conducted, no suitable member of staff was available to play this role. 151
socially constructed, negotiated and shared meanings (Hughes, 2003). So, for example, the way that adults with TBI and their significant others interpret their experiences of care following TBI is influenced by negotiated and shared understandings between them and the health professionals that provide their care. These understandings in turn have been established in the context of the cultural and societal expectations of service provision following illness.
In interpretivism, researchers attempt to interpret why people act in certain ways, by attempting to see things through their eyes (Grbich, 1999; Schwandt, 2000). Researchers also investigate how people’s actions are influenced by their interactions with others and the wider cultural context of the experience. I chose the interpretivist framework to guide data collection and analysis in this stage of the study because I asked questions about how adults with TBI and their significant others experienced their continuum of care after head injury and what factors influenced their actions in that experience, and their interpretation of events.
As stated earlier, the data collection tool used in the second stage of this research was interviews. A number of different types of interviews can be used in qualitative inquiry. These range from structured (i.e., standardised or survey interviews) to semi- structured (i.e., interviews which may have a combination of closed- and open-ended questions centred around a fixed schedule) through to unstructured interviews. The form of interviewing taken in this research involved an unstructured approach (Minichiello,
Madison, Hays, Courtney, & St John, 1999). By taking an unstructured approach, I was able to change and/or adapt questions to meet the varying experiences and impairments
(i.e., cognitive-communication) of participants.
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Interviewing is a conversation with a specific purpose (Minichiello, Madison, Hays,
Courtney, & St John, 1999). In this case it was a conversation between me and the participant, focusing on the participant’s perception of self, life and experiences throughout the healthcare journey following a TBI. Using this method, I gained access to, and came to understand, the interpretations of participants’ experiences.
The interviews in this research were directed by participants, with only minor input from me. I had certain questions which formed the basis of a broad interview guide (see
Appendix F). However, when asking these questions, I followed a conversational style of questioning rather than an interrogative style. The interview guide was developed around a list of topics of interest to me, generated from the preliminary analysis of the questionnaires. The topics of interest were not formulated into fixed questions with specific ordering, but were used to guide the interview and probe for further information
(Minichiello, Madison, et al., 1999). The use of the interview guide was flexible and open to change throughout the interviewing process.
One of the limitations of this type of research is that I obtained only a verbal account of what participants said they experienced. Therefore, what I heard could be self- deception or interview deception on the part of the interviewee. One of the ways I attempted to limit these possibilities was by looking at the natural state of participants’ bodies. According to Minichiello et al. (1999), what people say may be open to doubt.
However, what they say with their bodies is more certain. In the context of the interview I watched the participants’ bodies and made judgements about potential interviewer deception. When this possibility occurred, I gently probed the issue further and made my interpretation of what the participant was saying on the balance of the evidence.
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4.4.2.1 Procedure
Participants from Stage 1 of the study were able to indicate their interest in becoming involved in this second stage of the research by answering the last item on the questionnaires (see Appendix B and C). If they responded “yes” to the question “Would you like to participate in a follow-up interview to discuss these issues further?” they were asked to provide their name, phone number and address to be further contacted. I then provided participants with an additional information sheet and consent form (see Appendix
G) detailing the aims of interviewing, its benefits, issues of confidentiality and the time taken to complete the interview. All participants were required to sign and return an informed consent sheet before participating in this stage of the research.
I travelled to a place of each participant’s choosing (i.e., home or a local café) to conduct the interviews. Fourteen TBI survivors and 9 significant others took part in this stage of the study. Each interview took the form of a guided oral history (Minichiello,
Madison et al., 1999), in that a face-to-face interview was conducted, allowing participants to talk in depth about the continuum of care they experienced. During these interviews, the significant other of the adult with TBI was invited to take part, as oral histories often contain the danger of memory bias and event reinterpretation (Bowling, 2002). It was hoped that by including a significant other, the oral histories reported by the adult with TBI might be cross-checked with significant others so as to confirm their content.
One of the major advantages of this second stage of the study was that complex issues initially identified in the questionnaires were probed, answers were clarified, and a potentially more relaxed research atmosphere generated greater insights into possibly sensitive information (Bowling, 2002). The time taken to complete interviews varied from
45 minutes to 2½ hours, depending on participants’ levels of engagement and fatigue.
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All interviews were audio recorded, with participants’ permission. They were then transcribed by a professional transcription service and analysed by me. Audio recording was used in preference to manual recording because it allowed me time to attend to participants. A good quality MP3 recorder was used to enhance the quality of the playback and reduce loss of research material due to inaudibility. I also took brief notes during interviews, using key words and phrases. This helped me keep track of the topics covered.
Interviews were transcribed and kept for later analysis. Field notes, as recommended by Minichiello, Aroni, Timewell and Alexander (1995), were also kept to record perceptions of the management of interviews and to assist with their subsequent analysis.
4.4.2.2 Field Notes
In an attempt to capture my impressions of the key issues discussed in the interviews, field notes capturing my reflections on each interview were written in a journal immediately after the interview. This journal consisted of two separate sections, a transcript file and a personal file. The transcript file consisted primarily of an accurate transcription of each interview. However, alongside these transcriptions, critical notes were written examining the conduct of the interview and suggesting general ideas for coding categories.
These notes were elaborated upon in my personal file. This process was recommended by
Minichiello et al. (1995).
The personal file of my field notes consisted of a chronological record of my reflections on the substance and the methodological strengths and weaknesses of each interview. Comments made in this file included my perceptions of:
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• the occupation of the adults with TBI (i.e., their productivity, self-maintenance,
leisure and rest (Chapparo & Ranka, 2006) and their relationship with their
significant other, as well as my role as a facilitator within the interviews,
• the location and timing of the interview,
• ethical issues which arose (e.g., one participant told me s/he was not taking the
prescription medication for a diagnosed mental health condition as s/he did not
believe s/he had this condition. My decision not to act on this information given
my subsequent conversations with this participant and the ethics committee
were thoroughly documented),
• the procedure for collecting/extracting data,
• how participants’ ideas developed and patterns in the data emerged, and
• potential themes and connections arising from the data.
Two stages were employed within this research to investigate the continuum of care experienced by adults with moderate to severe TBI and their significant others in Victoria.
The first stage involved the dissemination of quantitative questionnaires, the second involved qualitative interviews. The results of these stages were triangulated, and in doing this a more complex understanding of the experiences of accessing healthcare following
TBI was developed. Before both stages were implemented, however, the ethical considerations of conducting this research needed to be reviewed. A discussion of these concerns appears below.
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4.5 Ethical Considerations
As this study involved an exploration of the way participants thought, felt and acted, there was potential to harm or exploit them (May, 2001). The ethical considerations of this study therefore needed to be addressed before the research was conducted. These considerations included that participants were not caused undue stress as a result of their participation in the study, that they were adequately informed of the purpose of the study, and that their confidentiality was protected. Strategies employed to ensure participant confidentiality, appropriate information dissemination and a reduction in undue stress are discussed in Section 4.5.1.
The process of obtaining ethics approval for this study was threefold. Initially, the
Charles Sturt University Ethics in Human Research Committee (protocol 2007/071) approved the project. However, as the study was conducted at the Alfred and Royal
Melbourne Hospitals, approval was then sought and obtained from the Alfred Hospital
Human Research Ethics Committee (protocol 170/07) and the Royal Melbourne Human
Research Ethics Committee (protocol 2007.175). Ethics approval was received from all committees by February 2008.
4.5.1 Potential Burden and Risks Experienced by Participants
An important ethical consideration in all research projects involves protecting participants from undue burden and risk. The potential risks to participants were evaluated and procedures were put in place to minimise them and address any discomfort or stress participants might experience through the course of the research. These procedures are outlined here.
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4.5.1.1 Obligation to Participate in Research
Adults with TBI and their significant others might have felt obliged to participate in the first stage of this research because they received the questionnaire from the hospital that had provided their acute care. Given the common perception held by participants that the acute hospital saved my life (186a) I was concerned that they would participate in the research out of a sense of obligation. I addressed this risk by sending an information sheet
(see Appendix D) with each questionnaire, explaining that participants were not obligated to complete the questionnaire, and that they would not be discriminated against in their future care should they decide not to. This information sheet also contained information regarding the purpose of the research, its benefits, issues of confidentiality and the time needed to participate.
4.5.1.2 Distress on Recall
I acknowledged that adults with TBI and their significant others could become distressed in interviews when recalling the events of their care following their TBI. I addressed these situations when they occurred, as I am a practising speech pathologist adept at dealing with the alternating phases of openness, withdrawal, trust, distress and embarrassment which arose as participants reflected on the care they received after sustaining a TBI. I am also skilled in bringing participants back to a positive frame of mind in order to leave them calm at the conclusion of each interview. This meant that no topics at the end of interviews contained emotional or threatening content. All interviews concluded with participants being told what valuable information they had given. No participant looked distressed or expressed feelings of distress at the conclusion of the interview.
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However, if this had occurred, I was prepared to refer participants to a local counselling service or support group to further discuss their feelings.
4.5.1.3 Length of Questionnaires and Time Taken to Complete Them
Another potential ethical concern regarding this research was the page length of the questionnaires (21 pages for participants with TBI and 11 pages for their significant others) and the time needed for their completion. Given the aims of this research, all information included in both questionnaires was felt to be essential. The questionnaires could not be made any shorter. However, steps were taken to manage questionnaire length and combat potential participant fatigue. For example, participants with TBI were provided with the option to complete the first questionnaire with the assistance of a significant other. All participants were prompted to take regular rest breaks during completion of the questionnaires. Finally, participants’ information sheets made them aware that they were under no obligation to complete the questionnaires.
4.5.1.4 Maintaining the Confidentiality of TBI Services
The confidentiality of the major acute hospitals and health services providing TBI care also needed to be protected in this research. Throughout the interviews, participants mentioned the names of health professionals and service providers and often provided criticism of those health services or healthcare workers. The location and names of all health services and healthcare workers were removed in transcriptions and survey data, and publication of the research findings will not identify services, individuals or locations.
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4.5.2 Informed Consent and Confidentiality
Ethically conducted research requires that participants be aware of their level of involvement in the research. It also requires that participants’ confidentiality is protected. In this research, a number of procedures were implemented to ensure these requirements were met.
4.5.2.1 Gaining Informed Consent
Return of the questionnaires was taken as an indication of voluntary consent to participate in the first stage of this research. Participants were aware of this as they received an information sheet (see Appendix D) accompanying the questionnaires. An additional information sheet and consent form (see Appendix E) were provided to all participants taking part in the second stage of the research. All participants were asked to sign this consent form after reading the information sheet, prior to taking part in interviews. If any participants with TBI were unable to consent, for reasons of impaired cognition or literacy skills, a significant other was able to sign on their behalf, once familiar with the purpose of the research, issues of confidentiality, and time taken to participate. I was present but not coercive when participants of stage two signed their consent to participate. Therefore, I was able to answer any questions and ensure that all participants were fully informed about the research before providing their informed consent.
All information sheets and consent forms used in this research were written in Easy
English (Disability Online, 2009) (see Section 4.4.1.1).. This was important given that participants’ literacy skills might have been affected by the severity of their TBI (see
Appendices D, E & G).
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4.5.2.2 Protecting Participant Confidentiality
I was aware that participants with TBI and their significant others might feel anxious about their identities becoming known, particularly if they were critical of the care they received. I addressed this risk by including an assurance in the information sheet that all information gathered would remain confidential. To maintain this assurance, the following steps were taken:
1. The names, addresses and telephone numbers of all participants replying to the
first stage of this research (i.e., questionnaire) were unknown to me.
Questionnaires were sent to participants from the metropolitan hospitals which
had provided their acute care. Hospital administrators identified suitable
participants from their client database and attached address labels to pre-
packaged envelopes provided by me. The hospital administrators then posted
the envelopes to participants (I met the costs of the dissemination of
questionnaires). Participants’ questionnaires were returned to me via pre-paid
envelopes. All questionnaires were then de-identified using coding (e.g., the
questionnaire of a particular participant with TBI was coded 001a and the
questionnaire completed by the significant other was coded 001b).
2. The contact details of participants who agreed to be involved in the second
stage of this study (i.e., interviews) were known to me. Participants interested
in being interviewed were asked to write their name, address and telephone
number in the last question of the questionnaire. When the questionnaire was
returned, this question was detached from it and filed separately. The
questionnaire was then coded and placed with the other questionnaires, and the
identifying information was used to contact participants for interviewing. The
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identifying information was then transferred to an electronic file which was
password protected, and its hardcopy was shredded. Participants who took part
in both stages of the research were allocated the same code to allow
triangulation of data methods upon analysis.
3. Interviews occurred in a place of the participant’s choosing (e.g., home or local
café). When interviews were completed, audio recordings and transcribed
interviews were stored securely and were accessible only by me. All
transcriptions arising from audio recordings contained pseudonyms. All
electronic files containing transcriptions with pseudonyms were password
protected.
4. The field notes I used to evaluate interviews also contained pseudonyms.
4.6 Participation Selection and Recruitment
Participants who took part in Stage 1 were all Victorian adults, aged between 18 and
65 years, with a moderate to severe brain injury, and their significant others. This age group was targeted as there are certain important rehabilitation differences which distinguish younger adults from the older TBI population (i.e., those aged over 65 years), making the continuum of care they receive important. These differences include the fact that younger people with TBI present with a much more varied pattern of symptoms (i.e., combinations of physical, cognitive, behavioural, or emotional deficits) which require specialist rehabilitation; they have different active goals for rehabilitation, especially with regard to return to work and child care; they have greater opportunity for neuroplasticity, and almost always have a longer lifespan over which to receive the benefits of rehabilitation (British
Society of Rehabilitation Medicine & Royal College of Physicians, 2003).
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Participants with TBI included in this stage had been admitted to either the Royal
Melbourne Hospital or the Alfred Hospital for acute care between July 1, 2001 and June 30,
2005. June 2005 was selected as the latest acute admission date to ensure that all participants had had an opportunity to complete their continuum of care and to experience life back in the community before taking part in this research.
Significant others included in this research were any people related to or friends with the adult with TBI, who performed a caregiving function following their TBI. The majority of significant others (98%) included in this research had known the person with
TBI prior to their head injury and had been involved in the rehabilitation following its onset.
The Royal Melbourne and Alfred Hospitals were approached to assist with participant recruitment in this study because, according to the Health Department Victoria,
Community Services Victoria and Traffic Accident Committee (1999), it is common practice for people with brain injuries to be admitted to specialist trauma centres for acute care regardless of where they live. Therefore, by approaching these hospitals, the majority of people who had sustained moderate to severe TBI in Victoria requiring acute hospitalisation between July 1, 2001 and June 30, 2005 were invited to take part in this study.
Questionnaires were sent to all Alfred Hospital (1271 questionnaires) and Royal
Melbourne Hospital (500 questionnaires) clients who met the selection criteria, inviting them and their significant others to respond. In total, 202 people with TBI and 184 significant others replied. An expression of interest to participate in the interviews in Stage
2 of this study was included as the last item in the questionnaires. Ninety people indicated
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their interest, and purposive sampling (Minichiello, Sullivan, Greenwood, & Axford,
1999), was used to select 14 adults with TBI and 9 significant others for interview.
These participants were selected on the basis of their degree of rurality according to the Accessibility Remoteness Index of Australia3 (i.e., highly accessible, accessible, moderately accessible, remote and very remote) (Commonwealth Department of Health and Aged Care, 2001) as well as on the basis of the level and type of healthcare funding allocated to finance their rehabilitation (i.e., public, private or compensable funding).
Patton (2002) described such a sampling strategy as “maximum variation sampling”, which purposively selects a wide range of cases to obtain variation in the dimensions of interest.
The 23 participants (14 people with TBI and 9 significant others) chosen for Stage 2 represented all age groups, funding models and ARIA localities under investigation in this study (see Table 4.4).
3 An index used to measure and classify the remoteness, based on road distance, of populated localities in relation to service centres of different sizes. The index divides Australia into five categories: highly accessible (a location with relatively unrestricted access to services); accessible (a location with some restrictions to services); moderately accessible (a location with significantly restricted access to services); remote (a location very restricted from services); and very remote (a location with very little access to services) (Commonwealth Department of Health and Aged Care, 2001). 164
Table 4.4 Characteristics of Participants Included in Stage 2
Participant characteristics in Stage 2 People with TBI Significant others (n = 15) (n = 9) n % n %
Age 18-25 years 2 13.3 1 11.1 26-35 years 4 26.7 1 11.1 36-45 years 3 20.0 3 33.3 46-55 years 3 20.0 2 22.2 56-65 years 3 20.0 2 22.2
Gender Male 9 60.0 2 22.2 Female 6 40.0 7 77.8
Funding Public 6 40.0 Private 2 13.3 Compensable 7 46.7
Location Highly accessible 12 80.0 Accessible 3 20.0 Moderately accessible α 0 0.0 Remote 0.0 Role of significant other Family member 4 44.4 Spouse 2 22.2 Partner 3 33.3 Friend 0 0 Other 0 0
α Only one adult with TBI reported a moderately accessible hometown location. This participant did not wish to be interviewed. No participants reported living in remote areas in this study.
4.7 Data Analysis
4.7.1 Stage 1: Two questionnaires
Data arising from the questionnaires were entered separately into two spreadsheets and analysed using the Statistical Package for the Social Sciences (SPSS) and QSR NVivo
7. SPSS analysis of the closed-ended questions consisted predominantly of descriptive statistics (i.e., frequency and percentage distributions, and measures of central tendency) to
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describe the general trends in the data recollected by participants with TBI throughout their continuum of care.
Open-ended questions were coded using NVivo to identify common ideas expressed by TBI survivors and their significant others when reflecting on their continuum of care.
The coding process used in this stage was consistent with a content analysis procedure in that responses were coded into descriptive categories (as described by Miles and
Huberman, 1994). Content analysis differs from thematic analysis in that the major categories are determined before coding. However, new codes were also developed in response to new trends emerging in the data. Appendix H contains a list of the codes used to analyse open-ended responses.
4.7.2 Stage 2: Interviews
In qualitative research, providing detailed description of the methods used to analyse the data adds to the strength of the findings (Ritchie, 1994). In this section the procedure used to analyse data arising from the second stage is described and justified. A thematic analysis, within a phenomenological approach, was used to analyse the data from the interviews. Before discussing the procedure used in thematic analysis, a brief discussion of phenomenology is provided.
4.7.2.1 Phenomenology
According to Morse and Field (1995), phenomenology seeks to understand the lived experiences of individuals and their intentions within their “life world”. Within this approach, I asked participants what it was like to access healthcare following a TBI.
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Phenomenology was the method of choice for this research as I sought to elicit, understand and make sense of participants’ experiences.
There are four main existentials that guide phenomenological reflection: lived space
(spatiality), lived body (corporeality), lived time (temporality) and lived human relation
(relationality or communality) (Van Manen, 1990). An awareness of these four existential premises was important in guiding my analysis of participants’ experiences.
One critical aspect of phenomenology was the need for me to suspend my own views or preconceived ideas about a phenomenon and to seek to understand it through the eyes of participants. Being aware of this aspect and of my motivations (see Chapter 1,
Section 1.4) in researching this topic, I avoided where possible allowing my perceptions to influence participants’ responses. The aim of this type of inquiry is to show that although the phenomenon under investigation is experienced uniquely by each individual, there exists underlying unifying meaning of the experience that is essential and invariant for all people (Hickson, 2008).
4.7.2.2 Approaches to thematic analysis
Unlike the statistical analysis of Stage 1 data, there are no specific rules which need to be followed in the analysis of qualitative data. There are, however, a number of generally accepted principles of data analysis in qualitative research, including coding, data reduction, analysis concurrent with data collection, and the portrayal of the final analysis in a visual way (Miles & Huberman, 1994). With these general principles in mind, my data analysis method drew on two particular approaches: Morse’s (1995) approach to phenomenological data analysis and Attitride-Stirling’s (2001) thematic networks analysis.
By my use of selected elements from these two analytical techniques, the nature of the data
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was more adequately addressed than by using either approach alone. Morse’s phenomenological approach to data analysis and Attride-Stirling’s thematic networks analysis are now described. This is followed by a description of the procedure used in this study and how these two approaches were combined.
4.7.2.2.1 PHENOMENOLOGICAL APPROACH TO DATA ANALYSIS
Morse’s (1995) phenomenological approach to data analysis uses three phases of analysis: intraparticipant, interparticipant and interrelationships between themes. In the first stage of data analysis, intraparticipant analysis, immersion of the researcher in the data as a whole, is encouraged. This is achieved by the researcher listening to tapes and by extensive reading and re-reading of participant transcripts. The researcher then reflects on these data as a whole. The meaning of each sentence is considered in light of the complete transcript, and statements that appear particularly revealing are highlighted.
In the next stage of analysis, interparticipant analysis, the researcher seeks commonalities between participants, gathering statements that are conceptually similar
(Morse, 1995). These interparticipant themes constitute the essence of the phenomenon.
Although some themes will be common to all participants, others will not. These unique themes provide variation and enrich the data through consideration of a range of experiences.
The third and final stage of data analysis is to seek interrelationships between the themes and descriptions. Using participant quotes from the interviews, concrete illustrations providing a realistic and accurate portrayal of the phenomenon are provided for the reader.
To ensure validity the analysis is given back to participants for verification, and any
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omissions, areas of disagreement, or inadequate description are further interpreted and corrected (Morse, 1995).
4.7.2.2.2 THEMATIC NETWORKS ANALYSIS
Thematic networks analysis builds on Morse’s (1995) phenomenological approach to data analysis. This analysis uses coding, abstraction of themes and the formation of visual representation to interpret qualitative data (Attitride-Stirling, 2001). The unique aspect of this approach is the use of web-like networks to visually represent and organise themes derived from the data. The approach also provides a detailed description of the six steps which are undertaken in the analysis. These are:
1. Code material: In this step a coding framework is established and used to
dissect all transcripts into coded segments.
2. Identify themes: The segments of coded transcript are then reread to identify
themes which encapsulate the data.
3. Construct thematic networks: In a process of data reduction, the basic themes
are then grouped under more abstract headings and then finally global themes.
The basic, organising and global themes are then placed in a web-like visual
network which illustrates the relationship between each theme. Depending on
the data and the nature of the research questions, a number of thematic
networks may develop.
4. Describe and explore thematic networks: Using the visual network as an
interpretive tool, the thematic networks are explored and described. To
facilitate this process, the researcher returns to the original transcripts to ensure
that themes adequately address the meaning of the text in context.
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5. Summarise thematic networks: In this step, the main themes emerging from the
exploration of the thematic networks are summarised. This helps to identify
patterns which have emerged in the exploration of networks.
6. Interpret patterns: In the final step, the various thematic networks derived from
the data are considered and contrasted with each other to form larger
conclusions about the findings.
The use of thematic networks to conduct a thematic analysis is proposed to assist in the organisation and interpretation of the data and elucidate patterns inherent between major themes from the text (Attitride-Stirling, 2001).
4.7.2.3 Data Analysis Procedure
The data analysis procedure used in Stage 2 of the study is now described in detail, and its similarities and differences to the abovementioned data analysis approaches outlined. My approach to data analysis involved nine steps.
Step one: When participants had agreed to be involved in the second stage of this research but before interviews were conducted, I reread participants’ responses to both questionnaires, taking note of their recollected healthcare journey, satisfaction with services and deviations in care as compared to clinical care guidelines. I used these notes to modify the interview guide in order to specifically target topics of interest (e.g., reasons for service disengagement following referral).
Step two: I then attended and conducted all interviews and used probing and expansion techniques to encourage participants to explore and analyse their experiences in
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accessing care following their TBI. The interview guide was modified after each interview, listing new and interesting topics raised by participants (such as the importance of the role of another person with TBI in normalising participants’ experiences). These topics generated further discussion, exploration and analysis in subsequent interviews.
Step three: Following each interview, I wrote field notes commenting on the individual perceptions of participants, the relationships between participants, the interview setting, the role I played within the interview (i.e., facilitator vs. passive observer
(Minichiello, Madison et al., 1999)), as well as the strengths and weaknesses of the conduct of each interview. These notes aided and informed the preliminary analysis of the interview transcripts.
Step four: Once field notes were made, I again listened to the audio-recorded interviews and identified key ideas expressed and recurrent themes. These early ideas were reordered and included with case summaries sent out to participants for validation. Formal themes were not identified until data collection was complete.
These four steps of analysis were defined by Ritchie and Spencer (2004) as the familiarisation stage. By this time a researcher is expected to have become thoroughly familiar with the data by reading and listening to participant transcripts and reviewing observational notes. These steps are also consistent with Morse’s (1995) first, intraparticipant phase.
Step five: Once I had listened to the interviews, they were uploaded on the Pacific
Solutions web server (Pacific Solutions, 2008). This web server specialises in medical,
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legal and research transcriptions. Within 3 days, transcriptions of the interviews were returned for analysis. Pacific Solutions adheres to the Australian National Privacy
Principles extracted from the 1988 Privacy Act (The Office of the Privacy Commissioner,
2006). When uploading interviews on this professional transcription site, I provided specific requirements for transcripts, including formatting needs and level of detail required. When the transcripts were returned to me, I re-listened to the interviews, checking the transcriptions for accuracy.
Step six: Following accuracy checks, I hand-coded all transcripts. This coding initially involved segmenting slabs of text relating to specific research questions. These segments ranged from a single conversation turn to pages of text (see Appendix I). Initial coding in this way helped reduce data fragmentation: segmented data loses meaning without the context of the original utterance (Attitride-Stirling, 2001).
When transcripts had been coded according to the research questions, they were then recoded based on the concepts and ideas which had emerged from participants. As this research was inductive in nature (i.e., not devised with the intention of proving an existing theory), the generation of codes was data driven (Denzin & Lincoln, 2005). The initial codes were dynamic and were constantly re-labelled to develop codes which best described the data. For example, one of these first level codes was identity trade off. An example of a participant quote which was coded as identity trade off was:
Being highly successful in business and being 25 at the time and having to resign, I guess, led to post-traumatic depression because my job was a very large part of my identity (5a)
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Step seven: After initial hand coding was completed, transcripts were uploaded to
NVivo and re-coded. NVivo was used in this study to aid with data management, organisation and storage. Following coding, first level codes were then collapsed and broader categories were formed. This process of data reduction, whereby basic themes are grouped under more abstract organising and then more global themes, is consistent with the approach to qualitative analysis described by Attitride-Stirling (2001).
To use the previous example to demonstrate data reduction, the code identity trade off was placed with another code learning to cope into a larger category named adapting to impairments and redefining self. This larger category was felt to adequately describe the essence of the two first level codes. That is, participants’ ability to redefine themselves given their new limitations and participants’ learning to cope with this new identity were seen as components of adapting to their impairments and redefining their new selves.
Step eight: Following this first stage of data reduction, second level categories were reorganised into five overriding themes. These themes encapsulated the data coded within categories. To again use the previous example, the second level category adapting to impairments and redefining self was placed with three other categories recognising impairments, emotional reaction to impairments, and accepting impairments and readiness to engage with therapy, into the major theme of Acceptance and readiness: I never recognised my head injury until 2 years after the accident. Figure 4.1 shows a visual representation of the coding process.
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Figure 4.1 Example of Coding Process From Level one Code to Final Theme
Acceptance and readiness: I never recognised my head injury until 2 years after the accident
Recognising Emotional Adapting to Accepting impairments reaction to impairments and impairments and impairments redefining self readiness to engage with therapy
Surviving Identity trade offs Learning to cope depression
Step nine: Once themes were formed, participant interviews were rechecked to ensure that the meaning of the data had not been lost through the coding process. This process is recommended to ensure validity of the researcher’s findings in Morse’s (1995) phenomenological approach to data analysis.
4.8 Ensuring Scientific Rigour
The usefulness of the findings of a research project depends on the extent to which clinicians, consumers and fellow researchers can rely on data as an accurate and meaningful indicator of the behaviour or attribute under investigation (Portney & Watkins, 2000). In order for data to be considered an accurate indicator of the behaviour under investigation, it must be considered scientifically rigorous. Different research paradigms have different ways of demonstrating scientific rigour. The positivist paradigm requires consideration of measures of reliability and validity, whereas the interpretive paradigm requires
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consideration of authenticity, transferability, dependability and confirmability (Davidson &
McAllister, 2002; Minichiello, Fulton et al., 1999). The steps I took in ensuring the rigour of both stages of this project are detailed in the following sections.
4.8.1 Rigour in Stage One
For positivist research to be rigorous it must be both reliable and valid (Portney &
Watkins, 2000).
4.8.1.1 Reliability
For reliability, the data collection tool used in a research (i.e., questionnaire) project must be consistent and free from error (Portney & Watkins, 2000). When a tool is considered reliable, research should be able to be implemented repeatedly with the same population and produce consistent outcomes. There are several ways to determine whether a research tool is reliable, including test-retest reliability, rater reliability and internal consistency.
4.8.1.1.1 TEST-RETEST RELIABILITY
Test-retest reliability relates to the stability of the data collection tool (i.e., questionnaire) in that it should obtain the same results when repeatedly administered
(Portney & Watkins, 2000). According to Bordens and Abbott (2008), there are two ways to assess the reliability of a questionnaire: the test-retest measure and the split half measure.
The test-retest measure involves the re-administration of the same questionnaire with the same group of participants after time has elapsed. Unfortunately, given the length of this questionnaire, it could not be readministered without participant inconvenience. Moreover,
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the fact that it measured attitudes, which have a predisposition to change through time, meant that test-retest reliability was not a suitable measure of reliability in this study.
Similarly, split half reliability measures, which involve splitting a questionnaire into equivalent halves and deriving a score for each half, then correlating the two scores, was not appropriate (Bordens & Abbott, 2008). Split half reliability is helpful in determining the reliability of questionnaires following single administration when the purpose is to assess a single specific behaviour. However, in studies such as this one, where several areas are examined, using the split half method would underestimate reliability.
4.8.1.1.2 RATER RELIABILITY
The second form of reliability reviewed in quantitative studies is rater reliability.
Rater reliability is not reviewed in this study as a human observation was not part of the measurement system. However, I was involved in scoring the questionnaires and transferring data from questionnaires to the SPSS database used for analysis. The reliability checking in this process is now briefly reviewed.
Questionnaire data from the first stage of this research project were entered directly into a PC-based statistical software spreadsheet (i.e., SPSS). This spreadsheet was divided into a series of columns, one for numbering participants, one for each question asked and one for each demographic item. Questions were coded by assigning values to corresponding variables. For numerical items (e.g., the number of kilometres a participant needed to travel to access services), the value of the variable under investigation (i.e., kilometres travelled) was entered in the spreadsheet. For categorical items, a number was assigned to each response. For example, in the second item of the first questionnaire, participants were asked what had caused their head injury. The responses coded were 1 =
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car accident, 2 = motor bike, 3 = fall, 4 = assault, 5 = other. The assignment of numbers to categorical responses was recorded on a code sheet. In this way, the numbers assigned to items, with a fuller description of the items, was kept and could be referred back to, a process recommended by Borden and Abbott (2008).
Once the data were entered, I reviewed them and checked for consistency between items. If any inconsistencies were noted, I decided, following consultation with my research supervisors, on the action to be taken. For example, if a participant respondent
“no” to item 38 on questionnaire 1, (“did you receive rehabilitation once you left hospital?”) yet responded “yes” to item 39, (“did you receive rehabilitation at your house once you left hospital?”) their response to item 38 was changed from no to yes. All decisions made were recorded in the code sheet, so consistency that on actioned responses was maintained each time participant inconsistencies were noted.
4.8.1.1.3 INTERNAL CONSISTENCY
The final form of reliability considered in quantitative research is internal consistency. Internal consistency is the extent to which items measure various aspects of the same characteristic and nothing else (Portney & Watkins, 2000). The questionnaire used in this study examined participants’ experiences of their continuum of care following the onset of a TBI. The items in this questionnaire were directly pertinent to participants’ experiences. The items formulated probed participants’ experiences based on recommendations of care as stipulated in clinical care guidelines (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006).
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Before questionnaires were distributed, they were reviewed by adults with TBI, their family members and experts in the field (i.e., medical and allied health staff from
Ivanhoe Private Rehabilitation hospital, the SWBIRS Service and Bendigo Healthcare).
These stakeholders were asked to review the questionnaire in order to ensure that all questionnaire items were necessary, clear and well written, and appropriate for the population under investigation.
4.8.1.2 Validity
To ensure that the first stage was rigorous, its validity also needed to be considered.
Validity refers to the extent to which a research tool measures what it is intended to measure (Portney & Watkins, 2000). Validity places an emphasis on the objectives of research and the ability to make inferences from outcomes of the research, given the research tool used. To assess the validity of the questionnaires used in the first stage of this research, several forms of validity need to be considered: content validity, criterion-related validity, construct validity and face validity.
4.8.1.2.1 CONTENT VALIDITY
In questionnaires, content validity considers whether questions cover the range of behaviours normally considered to be part of the dimension that is being assessed (Portney
& Watkins, 2000). For example, in this study, if the experiences of participants regarding their healthcare journey were being ascertained, all aspects of their healthcare journey should be considered. Given that the items included in the questionnaires were based on the recommendations made in comprehensive clinical care guidelines (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
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Group, 2006), they are considered to reflect all dimensions of a person’s health care journey.
4.8.1.2.2 CONSTRUCT VALIDITY
The second measure of validity, construct validity, refers to whether the results of the questionnaire agree with the predictions of outcome based on theory (Bordens &
Abbott, 2008). Construct-related validity is probably the least reviewed form of validity.
The process of construct validation presents considerable challenges to researchers as they need to show that those who score high or low on a measure behave as predicted by theory
(Portney & Watkins, 2000). In the case of this research, logic might predict that adults who receive no rehabilitation following their TBI have the lowest satisfaction with healthcare and the poorest experiences post-TBI. This form of validity was not reviewed in this study.
4.8.1.2.3 CRITERION-RELATED VALIDITY
The criterion-related validity of a questionnaire involves correlating the questionnaire’s results with those from another, more established measure. There are two ways to go about this. First, concurrent validity can be established by correlating the results of the questionnaire under investigation with those of another measure of the same dimension administered at the same time (Bordens & Abbott, 2008). In the case of this questionnaire, I was unable to establish concurrent validity as there were no other documented measures of healthcare experience following TBI.
A second way of establishing criterion-related validity is to establish its predictive validity. This is done by comparing the results of the questionnaire with some behaviour that would be expected to occur given the results (Borden & Abbott, 2008). For example,
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the experiences reported in the questionnaire could predict participants’ future willingness to access services. Because the names, addresses, phone numbers and personal circumstances of participants were not known at the time of the study, participants were not re-contacted to determine their current behaviour in accessing services. Therefore, predictive validity therefore could not be assessed in this study.
4.8.1.2.3 FACE VALIDITY
Face validity is the final type of validity reviewed in the first stage of this research.
Face validity refers to how well a data collection tool (e.g., a questionnaire about experience of healthcare following TBI) appears to measure what it was designed to measure (Bordens & Abbott, 2008). For example, the questionnaire used in this study has face validity, as its content reflects its purpose. Establishing face validity is arguably the most important form of validity, because if participants do not perceive a questionnaire is valid they may develop negative attitudes about its usefulness and might therefore decide not to participate in the research.
The face validity of the questionnaire to source participants’ experiences of healthcare following the TBI was reviewed during piloting. Piloting the questionnaire with stakeholders meant that the reliability and face validity of the questionnaire could be established before starting the research. For more information on the piloting process, see
Section 4.4.1.1.
4.8.2 Rigour in Stage Two
Given the interpretive element within the second stage of this research, quantitative methods of evaluating validity and reliability were not appropriate. However, Lincoln and
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Guba (1985) have suggested that the credibility of interpretive data can be ascertained with regard to the truth, value and consistency within the data. The truth and consistency of interpretive data can be established by using the following strategies: authenticity, transferability, dependability and confirmability (Minichiello, Fulton, et al., 1999). These strategies and how they were implemented in the second stage of this research project are now described.
4.8.2.1 Authenticity
Authenticity refers to an interpretive researcher’s ability to accurately represent the experiences conveyed by participants (Minichiello, Fulton, et al., 1999). It refers to the degree to which participants’ meanings and understandings of their world, voices, feelings and ideas have been represented (Higgs & Adams, 1996). Establishing authenticity in the second stage of this research project was achieved by implementing a number of techniques. These techniques included participant validation, the use of participant quotes, pairing of participant quotes with my description and interpretations, and data triangulation.
Participant validation: At the conclusion of interviews, participant validation was used to ensure that my interpretations of the data were consistent with the feelings and experiences of participants with regard to the continuum of care they had accessed following their TBI. Interview summaries (see Appendix J) and possible initial recurrent themes were sent to all participants. Participants were instructed to read through their interview summary, confirm that the summary was accurate, fill out the summary confirmation sheet and send it back to me in a stamped envelope provided. All interview
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summaries were returned to me and all participants agreed that the summary they had been sent was an accurate synopsis of the issues they had spoken about in their interview.
Use of participant quotes: The voices of participants were represented in this research through the use of thick description (Davidson & McAllister, 2002), particularly in
Chapters 8 and 9, which include multiple quotes from participant interviews. Throughout the coding process, an effort was made to ensure that quotations from all participants were included in data analysis and presentation.
Pairing quotes with my interpretations: Excerpts from participant interviews were paired with my description and interpretation in the reporting of this research. Through this strategy, readers of this research can evaluate the authenticity of the themes drawn from the data (see Liamputtong & Ezzy, 1999).
Triangulation of data sources: Triangulation of data sources (i.e., adults with TBI and significant others) and data methods (i.e., questionnaires and interviews) was used in this study to illuminate different aspects of the same phenomenon to clarify interpretations.
This method has been suggested by Liamputtong and Ezzy (2005) as useful in increasing the authenticity of the research.
4.8.2.2 Transferability
The findings of interpretive research are context-specific (Ezzy, 2002), and it is acknowledged that the findings of Stage 2 cannot be directly generalised to other studies and situations. However, the use of thick description of the data in this study facilitates its
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transferability to similar situations and increases the usefulness of its findings (Higgs &
Adams, 1996). Furthermore, the fact that the interview guide in Stage 2 was informed by the results of Stage 1, which involved the investigation of the experiences of a large sample of Victorians following head injury (202 people with TBI and 184 significant others), increased my ability to infer general observations about the TBI population in Victoria,
Australia.
4.8.2.3 Dependability
Dependability in qualitative research relates to how transparent a researcher is about the method and analysis used for the derivation of data interpretation (Davidson &
McAllister, 2002). For interpretive research to be considered dependable, an audit trail is recommended (Lincoln & Guba, 1985). My audit trail involves clear description of the thought processes I used to interpret the data. It allows those who read the research to follow my logic, while also providing an opportunity to agree or disagree with the conclusions (Portney & Watkins, 2000). In this chapter, an audit trail of the decisions I made with regard to the design and analysis of the study has been presented.
Furthermore, I engaged in a process of peer review, both with my two doctoral supervisors, as well as with TBI experts (i.e., staff from the SWBIRS, Alfred and RMH), wherein the emerging themes from the data analysis were discussed and evaluated. This strategy has also been suggested to increase the dependability of qualitative research
(Portney & Watkins, 2000).
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4.8.2.4 Confirmability
Confirmability is related to the concept of objectivity in positivist research (Portney
& Watkins, 2000). However, unlike positivist research in which it is assumed that researchers can eliminate personal bias, interpretive research acknowledges that researcher bias is inevitable. To counteract this bias, disclosure of my beliefs in the reporting of the research is provided (see Chapter 1, Section 1.4). I remained aware of my personal biases throughout this research. In this thesis, my background and reasons for conducting this research have also been outlined.
4.9 Reading the Results Chapters of This Thesis
The findings of this research are discussed in Chapters 5 through to 9. Due to the mixed methods approach undertaken in the collection of data, results are presented in a number of ways, including descriptive statistics, text and figures. This presentation reflects the diversity of the data collected.
The quantitative data derived from the first stage of the study are presented in
Chapters 5, 6 and 7. In Chapter 5, data from the first questionnaire reflecting the experiences of adults with TBI are presented; in Chapter 6 data from the second questionnaire, reflecting the experiences of significant others are presented, and in Chapter
7 a comparison of the recollections of participants with TBI and their corresponding significant others are undertaken. The data presented in these chapters consist of descriptive statistics and content analyses. To deal with the large amount of data generated by both questionnaires, numerous tables were required. The data presented are discussed in the results section of each chapter. Only the key findings from each section are highlighted and reviewed in the discussion. Given the sampling method used in Stage 1 of this study, the
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patterns in services accessed and experiences reported are interpreted as broadly applicable to adults with moderate to severe TBI and their significant others within Victoria.
The qualitative data derived from interviews in the second stage are presented in
Chapters 8 and 9. These data are presented in the form of texts and figures. Interpretations of these data are integrated once again with the discussion of relevant literature in the findings section of each chapter. It was felt that discussion alongside the findings would better facilitate understanding of the issues as they arose, rather than delay in-depth discussion to the conclusion of the thesis.
Throughout this thesis, the findings are presented and illustrated through the use of participant quotes. These quotes were sourced either from written responses in open-ended items from questionnaires or from interview transcripts. Quotes were selected on the basis of their ability to represent findings. All quotes are presented in italics and those longer than three lines are indented. To facilitate readability, minor editorial changes have been made. Redundant sections from quotes were removed and replaced with an ellipsis (…); punctuation and minor grammatical corrections were made to improve readability; square brackets ([…]) were used to insert words that might aid the flow and comprehension of the text. Care was taken in the editing of quotes to ensure that the underlying message was not altered.
Quotes from Stage 1 (questionnaires) were identified by the code they were allocated to protect participants’ confidentiality. For example, an adult with TBI is identified in Chapter 5 as 001a, and their significant other is identified in Chapter 6 as
001b. Participants from Stage 2 were allocated a pseudonym. Following the pseudonym, the code (PWTBI), indicated whether a participant was a participant with TBI or the significant other of a participant with TBI (significant other of PWTBI).
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4.10 Conclusion
This chapter has outlined the research paradigm, approach, design, and rationales for the choices made in this study. The documentation of the decision trail used in this research increases its accountability and transparency by allowing external scrutiny. Other methods used to ensure the trustworthiness of the research and how ethical considerations were addressed are also covered in this chapter. The following five chapters report the findings from both stages of the research.
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CHAPTER 5
STAGE 1: REPORTED CONTINUUM OF CARE EXPERIENCED BY
PARTICIPANTS WITH TBI
5.1 Introduction
The literature review chapters have demonstrated that although clinical guidelines exist stipulating care pathways following TBI, variations in access to care remain. These variations are caused in part by funding restrictions (Gray, 2000; Papastrat, 1992; Turkstra
& Kennedy, 2008), service centralisation (Foster et al., 2004; Newberry, 2001; Sample &
Darragh, 1998), changing healthcare environments (New South Government, 2007) and problematic referral processes (Foster et al., 2004). These variations have been identified following prospective client medical record review (Gabella, Hoffman, Marnie, &
Stallones, 1997) and interviews with healthcare professions (Sample, Tomter & Johns,
2007), with the majority of this research based in the health systems of the US and Canada.
Few studies exist which investigate the recollected experiences of consumers when accessing healthcare services following TBI and the factors which impact upon their ability to do so. A questionnaire was conducted in the first stage of this study to investigate consumers’ experiences in a large cohort of Victorians with TBI and their significant others.
This first stage of the Victorian based study addressed the following research questions:
1. What is the reported continuum of care experienced by adults with TBI?
2. What is the recollected impact of hometown location on the continuum of care
experienced by adults with TBI?
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3. What is the recollected impact of healthcare funding on the continuum of care
experienced by adults with TBI?
4. What other reported factors influence the continuum of care experienced by
adults with TBI?
5.2 Method
A detailed discussion of the procedure for this stage of the study was provided in
Chapter 4, Section 4.1. However, for ease of reference, a brief overview is provided here.
Two questionnaires (see Appendiices B & C) were mailed to the home address (as recorded on admission to acute care) of 1,771 adults with moderate to severe TBI. As stated earlier, the two questionnaires targeted different participant bases (i.e., adults with TBI and significant others). Chapter 5 presents and discusses data from the first questionnaire completed by adults with TBI. Data from the second questionnaire, targeting the perceptions of significant others are presented in Chapter 6.
Two hundred and two adults with TBI returned the first questionnaires, an 11.4% response rate. I acknowledge that this response rate is low, but according to Nabors, Seacat and Rosenthal (2002, p. 1043), a response rate of “approximately 15% is comparable to other mail surveys of clinical populations.” There are a number of possible reasons to account for the poor response rate in this study. Firstly, questionnaires were disseminated from participants’ acute treating hospitals. Therefore, the addresses to which questionnaires were sent were those written on participants’ initial admission paperwork, up to 7 years prior to the questionnaires being sent out. This meant that in order for participants to receive a questionnaire, they needed to:
• have improved enough to return home following their rehabilitation,
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• not have moved house in the time since their injury, or
• have kept ties with their home address (i.e., have a family member or friend still
living there, or have provided new tenants with their forwarding address).
Moreover, the questionnaire research tool is literacy based, and thus a number of adults with severe TBI might not have been able to complete it. To combat this problem, it was made clear on information sheets that participants could recruit a significant other to help them complete the questionnaire if needed. However, I recognise that the length of the questionnaire (11 pages, double sided) could have deterred potential participants. Of those who completed the questionnaire, 33% reported that they needed assistance from a carer, family member or significant other. Finally, 230 questionnaires were returned to me unopened. This meant that 202 participants with TBI responded out of a possible 1,541, a response rate of 13.1%.
The questionnaire consisted of questions relating to how the participants had sustained their head injury, their experiences of acute medical care, their experiences of both inpatient and outpatient rehabilitative services, and their transition between the two.
The results pertaining to these topics and a breakdown of the demographic details of those who responded are detailed below.
5.3 Results
5.3.1 Demographics of Participants with TBI
Table 5.1 displays the demographic data for participants with TBI. Participants fell in all adult age categories, demonstrating that a wide spread of adults with TBI was represented in this study. The majority of participants were male (68%) and of Caucasian
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descent (87%). Cultural minorities represented in this study included Italian, Greek,
Chinese, Vietnamese and Other.
The largest group of adults with TBI included in this study reported that they had completed their formal education at the conclusion of high school (40%) or by acquiring
TAFE certification (27%) (see Table 5.1). Few adults with TBI reported completing an undergraduate or postgraduate degree. The majority of adults with TBI also stated that they were currently single (47%), with only 27% of participants reporting that they were married, 15% in a de facto relationship and 9% recently separated.
Of the 202 (57%) adults with TBI who took part in this study, 115 reported that they were currently employed in paid work (see Table 5.1). The majority of these stated they worked at least 33 to 38 hours per week (67%). Of those who were in paid employment, reported hours working were: less than 8 hours (4%), 9 – 16 hours per week (8%), 17 – 24 hours
(9%), or 25 – 32 hours per week (13%).
The demographics of adults with TBI reflected in this study are not dissimilar to those reported by the Australian Institute of Health and Welfare (AIHW) in their study of hospitalisation rates following TBI between 1997 and 1998 (O'Connor, 2002). According to that report, the typical age of onset of TBI was the adolescent years, with the most common cause being road traumas in the male adolescent population (Fortune & Wren, 1999;
O'Connor, 2002; Schootman & Fourtes, 2000; Thurman, Alverson, Dunn, Guerrero, &
Sniezek, 1999).
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Table 5.1 Demographics for Participants with TBI (n = 202)
Demographics for people with TBI Numbers Percentage
Age < 18 years 0 0.0 18-25 years 45 22.3 26-35 years 47 23.3 36-45 years 35 17.3 46-55 years 42 20.8 56-65 years 27 13.4 66 years or older 0 0.0 Missing data 6 3.0
Gender Male 138 68.3 Female 59 29.2 Missing data 5 2.5
Cultural background Aboriginal or Torres Strait Islander 0 0.0 Caucasian 177 86.6 Italian 4 2.0 Greek 2 1.0 Chinese 3 1.5 Vietnamese 1 0.5 Other α 10 5.0 Missing data 7 3.5
Education Primary school 7 3.5 Mandatory completion of high school 80 39.6 TAFE qualification 54 26.7 Undergraduate degree 28 13.9 Postgraduate degree 25 12.4 Missing data 8 4.0
Number of hours in paid employment < 8 hrs 4 2.0 9-16 hrs 9 4.5 17-24 hrs 10 5.0 25-32 hrs 15 7.4 33-38 hrs 77 38.1 Missing data 8 4.0 Not employed 79 39.1
Marital status Married 54 26.7 De facto relationship 30 14.9 Separated 18 8.9 Single 94 46.5 Missing data 6 3.0
α For breakdown of “other” data see Appendix K, Table 1.
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One characteristic of the participants included in this study which is dissimilar from other studies targeting adults with moderate to severe TBI is the high rate of employment.
Among the participants in this study, 57% reported that they were currently employed in paid work. Although the nature of this work is unknown, 67% of those employed reported working for at least 33 to 38 hours per week. Isaki and Turkstra (2000) hypothesised that level of communication impairment is indicative of work re-entry. Therefore, it may be hypothesised that those participants willing to take part in the first stage of this research had functional communication and literacy skills which aided in work re-entry and retention
(Isaki & Turkstra, 2000). Given this finding, it may be that the participants who took part in this study were relatively high functioning (i.e., had the cognitive communication skills sufficient to complete questionnaires).
Comparison of this participant group with those who took part in another large scale
Australian study (Curtin, Jones, Mitsch, Alston, McAllister, Ginnivan et al., 2008) shows startling similarities. As stated above, 68% of participants in this study were male: 71% of the participants studied by Curtin et al. were also male. Most of the adults with TBI in that study were aged 26-55 years: The majority (61%) of participants in this study also fell within this age group. In the Curtin et al. study, 42% of participants were single and 36% were married or in a de facto relationship: Similarly, 47% of participants in this study were single and 42% were either married or in a de facto relationship. Moreover, 31% of participants in the Curtin et al. study reported being unemployed at the time the study was completed: 43% of participants were unemployed when my study took place. Finally, 58% of participants in the Curtin et al. study reported sustaining their TBI as a result of a vehicle
(either car or motor bike) accident. Similarly, most adults in this study (54%, see Table 5.2) acquired their TBI as a result of a road accident (either in a car or on a motor bike), with a
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smaller number (46%) of adults with TBI reporting they sustained their TBI as a result of a fall, assault or other cause (for a breakdown of the ‘other’ data see Table 2, Appendix K).
The majority of participants in this study reported that their TBI was of a severe to very severe nature (67%); others perceived their TBI as either mild or moderate (see Table
5.2); 14% of participants with TBI reported that the symptoms they experienced following their TBI were mild. They reported this despite the fact that only those who had been diagnosed as having a moderate to severe TBI, as classified by the Abbreviated Injury
Score (AIS)4, were sent questionnaires. This discrepancy could have resulted because of poor participant awareness of or insight into their deficits or because of reflection on their current skills following their recovery as opposed to reflecting on the severity of their injury at the time of its onset.
Of the 202 participants with moderate to severe TBI, one third reported having sustained their TBI when they were less than 25 years of age. The remaining participant ages at onset were evenly distributed, being 26 – 35 years (20%), 36 – 45 years (16%), 46 –
55 years (23%), with a dip in the 56 – 65 year (6%) age bracket (see Table 5.2).
4 The AIS is a numerical method for grading and comparing injuries by severity. The AIS is consensus driven and is based on an ordinal scale from 1 (minor injury) to 6 (lethal injury). Adults with a TBI with an AIS severity greater than 2 received a questionnaire. 193
Table 5.2 TBI Onset Information Reported by Participants with TBI (n = 202) TBI onset information reported by participants with Numbers Percentage TBI
Age at onset < 18 years 21 10.4 19-25 years 50 24.8 26-35 years 40 19.8 36-45 years 33 16.3 46-55 years 46 22.8 56-65 years 12 5.9
Cause of TBI Motor vehicle accident 78 38.6 Motor bike accident 31 15.3 Fall 35 17.3 Assault 15 7.4 α Other 43 21.3
Reported severity of TBI Mild 28 13.9 Moderate 32 15.8 Severe 65 32.2 Very severe 70 34.7 Missing data 7 3.5
α For breakdown of “other” data see Appendix K, Table 2.
5.3.1.1 Summary
The majority of adults with TBI included in this study were male Caucasians, aged
25 – 55 years. Most had completed mandatory high school requirements or had TAFE qualifications, and at the time this study was undertaken, were employed. Just under half of those who took part in this study were single. Most participants reported sustaining their
TBI as a result of a road accident (either motor vehicle or bike) and rated their TBI as severe to very severe.
The characteristics of this participant group are consistent with the participant group described by Curtin et al. (2008) in their study of participation rates for adults with TBI residing in rural and regional areas of New South Wales. This indicates that the sample of
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participants who self-selected to be involved in this study had the demographic characteristics representative of adults with moderate to severe TBI in New South Wales.
The following divisions of the results section of this chapter present the experiences of participants as they pertain to each research question. These divisions include the reported continuum of care experienced by adults with TBI, the recollected impact of home town location on the continuum of care experienced, the impact of healthcare funding on the continuum of care experienced, and other reported factors that influence the continuum of care reported by adults with TBI.
5.3.2 What Is the Reported Continuum of Care Experienced by Adults with TBI?
The results addressing the first research question, What is the perceived continuum of care experienced by adults with TBI?, are presented in the following six sections: access to stages of care as reported by adults with TBI, reported length of stay by adults with TBI within hospital based services, services reported to have been received by adults with TBI in each stage of their continuum of care, involvement of adults with TBI in guiding their own rehabilitation, transition planning, and the role of adults with TBI in their community following formal rehabilitation.
5.3.2.1 Access to Stages of Continuum of Care as Reported by Adults with TBI
As can be seen in Table 5.3, all participants with TBI reported accessing acute care.
This is not surprising, given participants were sourced via their acute care provider (i.e., the
Alfred or Royal Melbourne Hospital). However, their access to care following this point decreased. One hundred and twenty four participants (61%) reported receiving inpatient rehabilitation services. Participation increased slightly to 142 participants (70%) receiving outpatient rehabilitation. However, only 50 participants (25%) stated that they were
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receiving therapy services at the time they completed the questionnaire and only 44 participants (22%) reported that they received ongoing monitoring. This means that over half of the participants with TBI (n = 106 or 53%) reported that they were receiving neither therapy nor ongoing monitoring at the time of questionnaire completion. This is concerning, given repeated acknowledgement of the need for long-term support for adults with TBI and their families (Avesani et al., 2005; Coetzer & Rushe, 2005; Karlovits &
McColl, 1999).
Table 5.3 Recollections of Adults with TBI Regarding Access to Each Stage of the Continuum of Care (n = 202)
Continuum of care stages Yes No Missing data n % n % n %
Acute 202 100.0 0 0.0 0 0.0 Inpatient rehabilitation 124 61.4 65 32.1 13 6.6 Outpatient rehabilitation 142 70.3 54 26.7 6 3.0 Ongoing therapy 50 25.0 145 71.8 7 3.5 Monitoring 44 22.0 128 64.0 30 14.9
Over time, the needs of adults with TBI and their families have been shown to change and, in some instances, significantly increase as they adjust to altered occupational roles and life circumstances (Brooks et al., 1986; Brooks et al., 1987; Brooks & McKinlay,
1983; Marsh et al., 1998, 2002). According to rehabilitative guidelines (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006), adults with TBI and their families require information, practical support, continued education and easy access to health and social services to combat isolation, emotional distress, stress and practical overload which occur over time. Ongoing support is reportedly required following discharge from formal services in order to maximise the independence and quality of life for adults with TBI for what may be the next 50 or more
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years of their lives (British Society of Rehabilitation Medicine & Royal College of
Physicians, 2003).
Some participants made comments congruent with the need for long term support in response to open-ended questions that asked whether access to services could have been improved. The majority of the comments made related not to participants’ ability to access hospital-based services but to the lack of services available to them on discharge. This is illustrated with the quotes from four participants below.
Nothing [needs to be done] in [the] rehab hospital but ongoing longer term support would have been extremely beneficial. (53a)5
After being discharged from the [specialist acute hospital], there were no follow-up visits or checkups as was promised when discharged. (54a)
The follow-up is surely just as important as the treatment to ascertain progress in the big wide world. (102a)
They were okay in the hospital but there was no follow-up service and the contact number I was given was disconnected. (168a)
The need for services following discharge from residential rehabilitation has also been identified in international research. In a Canadian study of 16 consumers (8 adults with TBI and 8 family members) and 31 health professionals, LeFebvre, Pelchat, Swaine,
Gelinas and Levert (2005) found that the majority of the participants were satisfied with the availability of services during the acute phase of their care. However, this situation differed when the participants returned home. Once at home, the Canadian consumers criticised the
5 53 is the code allocated to this participant to protect confidentiality. Codes were allocated in numerical order. Therefore, 53 was also the 53rd person who returned a questionnaire. 197
lack of professional resources available to them. The opinions of health professionals mirrored consumers’ comments in that study.
Table 5.4 provides a summary of the rehabilitation pathways participants with TBI in this study recollected following after their TBI. According to TBI rehabilitation guidelines (British Society of Rehabilitation Medicine & Royal College of Physicians,
2003; New Zealand Guidelines Group & Accident Compensation Corporation, 2004), there are four distinct stages in the rehabilitation of adults following moderate to severe TBI.
Each of these stages is distinct and has different aims in relation to TBI recovery. A discussion of the process of TBI rehabilitation was presented in Chapter 3, Section 3.2.2.
For ease of reference, a brief overview is provided here.
The first stage in TBI recovery is acute neurosurgery care, the second is residential rehabilitation (i.e., inpatient rehabilitation), the third is non-residential rehabilitation (i.e., outpatient rehabilitation) and the fourth is longer term community support (i.e., ongoing therapy and monitoring) (New Zealand Guidelines Group, 2006). According to the recollections of participants in this study, only 41 adults with TBI (20%) received a continuum of care in line with clinical care guidelines (i.e., received acute care, inpatient and outpatient rehabilitation and either ongoing therapy or monitoring). Other rehabilitation pathways recollected are shown in Table 5.4.
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Table 5.4 Rehabilitation Pathways Recollected by Adults with TBI (n = 202)
Rehabilitation Pathways Recollected by Adults with TBI Number Percentage Acute only 38 18.8 Acute and inpatient rehabilitation 17 8.4 Acute, inpatient and outpatient rehabilitation 65 32.2 Acute, inpatient rehabilitation and ongoing therapy 1 0.5 Acute, inpatient and outpatient rehabilitation and ongoing 8 4.0 therapy Acute, inpatient and outpatient rehabilitation, ongoing 29 14.4 therapy and monitoring Acute, inpatient and outpatient rehabilitation and monitoring 4 2.0 Acute and outpatient rehabilitation 26 12.9 Acute, outpatient rehabilitation and ongoing therapy 3 1.5 Acute, outpatient rehabilitation, ongoing therapy and 7 3.5 monitoring Acute and ongoing therapy 1 0.5 Acute, ongoing therapy and monitoring 4 1.0 Acute and monitoring 1 0.5
5.3.2.1.1 Access to specialist services
Of the 137 participants with TBI who reported receiving inpatient rehabilitation, only 91 (66%) reported that they had accessed specialist neurorehabilitative services; and of the 142 participants who reported receiving outpatient rehabilitation, only 45 (28%) reported receiving home-based, context-specific therapy (see Tables 5.5 and 5.6). This indicates that although significant numbers of participants reported accessing services (i.e.,
61% accessed inpatient rehabilitation and 70% accessed outpatient rehabilitation) following discharge from their acute medical provider, few participants reported receiving specialist or contextually specific services as recommended in clinical care guidelines (British
Society of Rehabilitation Medicine & Royal College of Physicians, 2003).
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Table 5.5 Access to Specialist Services as Recollected by Adults with TBI (n = 137)
Access to specialist inpatient rehabilitation service n %
Yes 91 66.4 No 23 16.8 Don’t know 10 7.3 Missing data 13 9.5
Table 5.6 Setting Where Participants with TBI Reported Receiving Outpatient Rehabilitation Services
Setting (n = 142) Home-based Healthcare setting n % n %
Yes 45 28.2 103 72.5 No 97 68.3 39 27.5
The findings in this stage of the research replicate those reported in a practice review of TBI rehabilitation in New Zealand (New Zealand Guidelines Group & Accident
Compensation Corporation, 2004). According to that review, residential rehabilitation services in New Zealand tended to be low volume (for TBI clients) and not specialised, a combination that would suggest that most people with (severe) TBI were being managed in environments that might not be ideal for TBI clients and by staff who did not see TBI clients as their ‘main business’ and/or for whom they had special training (New Zealand
Guidelines Group & Accident Compensation Corporation, 2004).
International evidence supports the idea that the best client outcomes derived from
TBI rehabilitation come from dedicated TBI rehabilitation teams (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006). However, as the results of the above-mentioned New Zealand review showed, many rehabilitation providers disagree with the idea of specialist centres. This occurs regardless of the fact that the clear majority of consumers prefer to receive services
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they perceive as being specialist. The arguments mounted by clinicians against the provision of specialist services (i.e., too hard for families, travel, cost etc.) did not seem to outweigh the perceived advantages of better quality care in the eyes of consumers who had experienced current TBI care in New Zealand (New Zealand Guidelines Group & Accident
Compensation Corporation, 2004). Further research examining the perceptions of clinicians versus those of consumers with regard to the provision and prescription of specialist TBI rehabilitation services is needed.
5.3.2.1.2 Happiness with services accessed
Regardless of the fact that few participants with TBI in this study recalled receiving specialist services in appropriate contextual settings, a large number reported they were either very happy or extremely happy with the care they received throughout their healthcare journey (see Table 5.7).
Table 5.7 Degree of Happiness of Adults with TBI with Care Provided
Degree of happiness Acute Inpatient Outpatient (n = 202) rehabilitation rehabilitation (n = 137) (n = 202) n % n % n %
. Extremely unhappy 6 3.0 8 5.8 8 3.9 Not happy 10 5.0 6 4.3 10 5.0 Okay 44 21.8 32 23.4 52 25.7 Very happy 69 34.2 52 38.0 63 31.2 Extremely happy 45 22.3 36 26.3 29 14.4 Missing data 28 13.9 3 2.2 40 19.8
Participants made comments in response to an open-ended question relating to their degree of happiness with services. These comments reflected initial happiness with acute care, which appeared to reduce as participants made their way through their healthcare journey. For example, two participants wrote:
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In critical care the nurses and doctors were good. They not only looked after me but Mum and Dad as well. In the general ward, the care was very poor. [I was] left in [a wet] bed for at least an hour (…) [and was] not fed at times. (147a)
The emergency care [and] surgery [teams] were excellent. ICU [was] okay. The neurosurgery ward was extremely bad at the [specialist acute hospital]. (112a)
Examples of the reasons for the degree of happiness with services reported by participants when reflecting on their acute and inpatient rehabilitative care are listed in
Table 5.8. These reasons were established through content analysis of responses to two open-ended questions (Questions 11 & 27, see Appendix B).
Once participants recorded reasons for their degree of happiness with services in acute and inpatient settings, they were asked to suggest possible improvements for these settings. These suggestions were analysed using content analysis, the results of which are displayed in Table 5.9.
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Table 5.8 Reasons Given for Degree of Happiness with Services
Number of references Reasons and examples made Acute Inpt. rehab
Satisfaction with level of care 66 23 The staff, from [the] doctors to nurses were excellent. They took care of all my needs and put me on the road to recovery (09a).
Satisfaction with staff 27 16 I think that the doctors, nurses and especially (name of neurosurgeon) did every thing they could to save my life and I will be forever grateful for their efforts (129a).
Satisfaction with outcome following TBI care 20 7 My operation was successful and I made a complete recovery (70a).
Presence of disruptions throughout continuum of care (e.g. hasty 16 1 discharge) [I was] left in emergency as there were no beds available (100a).
Need for more information throughout care 13 2 I felt I was left a lot without myself or my family being informed of what was going on (11a).
Satisfaction with ability of family, friends and animals to play an 10 0 active role throughout continuum of care When my family and friends came to visit me it made me feel very happy (31a).
Satisfaction with care relative to severity of injury 4 0 Because I suffered a major head injury, with the care of the hospital I was able to recover quickly (69a).
Perception of degree of communication between services when 4 2 transitioning through continuum of care [I] was under the care of two teams – trauma and neurosurgery. They did not appear to communicate with each other. [I] only ever saw interns, who kept changing their opinions on the course of treatment (182a).
Need for additional services 3 2 Sometimes there was not enough staff to look after everybody (197a).
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Table 5.8 cont.
Number of references Reasons and examples made Acute Inpt. rehab
Need for improved care coordination 3 1 Being in three different rehab places with an acquired brain injury is inappropriate (72a).
Need for greater empathy for person with TBI 2 3 Some personnel [were] compassionate and good. But some were not and should be screened out!!! They were uncaring and unsympathetic. [I] was crawling on the floor and crying in pain and [the] doctors and nurses walked by and ignored my pleas (170a).
Satisfaction with hospital administration 2 0 Case managers constantly changed therefore [I] could not develop rapport. [They were] slow to organize treatment and claimed lost documentation [even though] it was sent on numerous occasions (45a).
Impact of staff on recovery 1 9 I went in on a stretcher and walked out and I feel this was due to the hard work put in by the staff at the rehab hospital (186a).
Impact of location on recovery 1 0 Although my therapists were helpful and thorough, the venue was disappointing. My room was fairly dirty and unhygienic and I did not like being locked in (01a).
Wish to return to normal 1 4 Because I felt it started my return to normal life (199a).
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Table 5.9 Improvements Proposed by Participants with TBI for Acute and Inpatient Rehabilitation Settings
Number of references made Improvements suggested and examples Acute Inpt. rehab
More information about services 17 4 I needed more information about what was available to me after the car accident (21a).
Additional services (i.e., more staff employed, more diverse 14 5 therapies offered) More staff needed. My parents were my major carers in hospital. [They took me to the], toilet and reminded to staff to replace my drip (43a).
Improvement in general level of care 10 7 I was left for long periods of time. I was unable to go to toilet or feed myself when food was brought. Attention to basic needs was a problem (15a).
Improved care coordination 11 5 Because they did a rather crap job and left things unfinished. My mother had to manage my case. My program could have been better managed (61a).
Improved infrastructure (e.g., more welcoming rooms, more 9 7 comfortable waiting rooms) A bed in a ward! This would have extended my hospital stay to ensure that I was more ready and prepared for rehabilitation transfer (1a).
Improved staff competence when working with adults with TBI 8 4 Need trained staff, staff with better attitudes, more family meetings and more staff. General rehab hospital was not at all equipped to deal with a TBI patient (167a).
Changed role of family, friends and animals within hospital (e.g., 6 3 greater role in assisting with therapies) Spend [time] with my family to help them understand the person with the injury rather than leaving them sitting in a chair for hours (149a).
Increased empathy for the person with TBI 3 3 Need more compassion and understanding, staff should take time to listen (182a).
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Table 5.9 cont.
Number of references made Improvements suggested and examples Acute Inpt. rehab
Improved hospital administration 3 0 Because staff didn’t fill out forms correctly it was hard for the compensable case manager to do anything other than sort out transport (…). I had to leave [the] ward [to] go to [the] pay phone ring and organise everthing myself (104a).
Lessen or enforce restrictions imposed on people following TBI 1 0 (e.g., if nil by mouth, don’t let them order food from canteen) I wanted to use the weights at the gym, but they wouldn’t let me because they kept telling me I was not strong enough to use them. They still won’t let me drive and they don’t like me drinking at all which I understand but I do like to drink with my family and friends. I want to have driving lessons but they won’t let me still, which makes me very angry, even though I sought of understand why they won’t let me (31a).
Improve location of services provided (e.g., provide services 0 1 closer to home) Lack of allied health staff in the country meant that I received very little physio the allied health [service] I was most in need of (19a).
Need for greater support for adults with TBI and their 0 3 significant other Need more support groups [I needed to speak to] other people in the same situation (21a).
Assist with ability to cope with TBI 0 1 They gave me other ways to think about my thoughts. To change the way I was thinking gave me options (122a).
Improved communication between staff, services and 0 1 significant others Communication in the rehabilitation hospital would have made the psychological rehabilitation easier in the early months (6a).
5.3.2.1.3 Perceived reasons why no rehabilitation was received
Thirty two percent of participants with TBI reported that they did not access inpatient rehabilitation (see Table 5.3). The main reason participants gave for not receiving rehabilitation services was that their treating team, consisting of either medical or allied health professionals, did not think it was required. This reason was given by 43% of those
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who did not access inpatient rehabilitation and 35% of those who did not access outpatient services (see Table 5.10).
Table 5.10 Reported Reasons for Lack of Access to Rehabilitation Services
Reported reasons for lack of access to rehabilitation services N %
Inpatient rehabilitation (n = 65) My therapist/doctor said I didn’t need it 28 43.1 I don’t know 14 21.5 Other α 14 21.5 The hospital was too far from home 5 7.7 I refused the service 3 4.6 There were no beds 1 1.5
Outpatient rehabilitation (n = 59) My therapist/doctor said I didn’t need it 21 35.0 Missing data 13 21.7 I don’t know 11 18.3 Other β 8 13.3 I didn’t want any more rehabilitation 3 5.0 I couldn’t travel to access rehabilitation services 2 3.3 I couldn’t afford it 2 3.3
α For breakdown of “other” data see Appendix K, Table 3. β For breakdown of “other” data see Appendix K, Table 4.
Other common reasons given by participants when referring to their inability to access inpatient rehabilitation included not knowing why they were not referred (22%), the service was too far from their home (8%), participant refused the service (5%) or participant perceived there was no room for them in the service (2%).
Similar reasons were given by participants when referring to their inability to access outpatient rehabilitation, as can be seen in Table 5.10. These reasons included that participants were unsure why they weren’t referred (18%), participants refused the service
(5%), participants reported that they could not afford to access the service (3%), and participants reported that they could not travel to access the service (3%). A large number of participants also reported ‘other’ reasons for their lack of access to inpatient and outpatient rehabilitation services. These reasons are listed in Appendix K, Tables 3 and 4.
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5.3.2.2 Length of Stay in Hospital-based Services Reported by Participants with TBI
Participants with TBI reported varying lengths of stay while receiving hospital- based acute and rehabilitative services. These periods varied from staying overnight in an acute hospital to staying more than a week. Likewise, in inpatient rehabilitation, participants reported lengths of stay from less than a week to more than a year (see Table
5.11).
Table 5.11 Length of Stay in Hospital Based Stages as Reported by Participants with TBI
Length of stay N %
Acute (n = 202) Overnight 7 3.5 Less than a week 24 11.9 A week 22 10.9 More than a week 92 45.5 Other α 44 1.8 Can’t remember 10 5.0 Missing data 3 1.5
Inpatient rehabilitation (n = 137) Less than a week 7 5.1 A week 9 6.6 More than a week, but less than a month 28 20.4 A month 10 7.3 More than a month, but less than 6 months 60 43.8 6 months 4 2.9 More than 6 months, but less than a year 8 5.8 A year 5 3.6 More than a year 4 2.9 Missing data 2 1.4
α For breakdown of “other” data see Appendix K, Table 5.
A large majority of participants remained in acute care for more than a week (46%), with the largest number of participants staying in inpatient rehabilitation for more than a month but less than 6 months (44%). TBI rehabilitation guidelines give little direction to service providers, health professionals, adults with TBI and their families regarding
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appropriate lengths of stay in residential rehabilitation facilities (i.e., acute and inpatient rehabilitation settings). It is recommended that adults with TBI who require post-acute services should be transferred to a specialist inpatient rehabilitation setting as soon as they are medically stable and able to participate in rehabilitation (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006). Further, transition from residential to non-residential settings (i.e., inpatient to outpatient rehabilitation settings) should occur as soon as possible because “ideally rehabilitation will take place in the person’s usual environment” (New Zealand Guidelines
Group, 2006, p. 68).
5.3.2.3 Services Reported to Have Been Received by Participants with TBI in Each Stage of
Their Continuum of Care
Table 5.12 outlines the services that participants with TBI reported they received while accessing acute care, inpatient and outpatient rehabilitation, and ongoing therapy.
Frequency data suggest that the services most commonly provided to adults with TBI during their acute care were medical services (92%), allied health services (38%) and psychology services (32%). These services are identically ordered in inpatient rehabilitation, (frequency of medical services = 91%, allied health services = 90%, mental health = 71%), with an additional, frequently received service provided by key workers
(61%). The role of a key worker has an established history in paediatric and adult TBI rehabilitation (New Zealand Guidelines Group, 2006).
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Table 5.12 Services Accessed at Each Stage of the Continuum of Care by Participants with TBI
Services accessed N %
Acute (n = 202) Medical care 186 92.1 Allied health 76 37.6 Psychology 64 31.7 Can’t remember 26 12.9 Otherα 15 7.4
Inpatient rehabilitation (n = 137) Medical care 125 91.2 Allied health services 123 89.8 Mental health services 97 70.8 Key worker 84 61.3 Other services wanted 26 19.0 Services not wanted 6 4.4
Outpatient rehabilitation (n = 142) Medical care 142 100.0 Allied health services 126 88.7 Mental health services 87 61.3 Case management 86 60.6 Return to work services 80 56.3 Driving assessment 77 54.2 Other services wanted 24 16.9 Services not wanted 5 3.5
Ongoing services (n = 199) Head injury supported leisure programs 21 10.4 Head injury support group 6 3.0
α Breakdown of “other” data is provided in Appendix K, Table 6
The role of a key worker, also referred to as a case coordinator or case manager, is to coordinate the assessment, management and support activities for a specified client. A key worker is focused on the needs of this client and family. Key workers provide continuity and good communication between the family, client, external services and the rehabilitation team (New Zealand Guidelines Group, 2006). The use of a key worker in TBI rehabilitation has been shown to result in greater client gains during and after rehabilitation and reduced carer distress (British Society of Rehabilitation Medicine & Royal College of
Physicians, 2003; Chesnut et al., 1999; Semlyen, Summers, & Barnes, 1998). Guidelines
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recommend that all adults who sustain a moderate to severe TBI should have an allocated key worker.
The services received in inpatient rehabilitation are mirrored in outpatient rehabilitation, where participants reported accessing medical services most frequently
(100%), followed by allied health services (89%), mental health services (61%), case management (61%), return to work services (56%) and a driving assessment (54%).
Ongoing therapy services to which participants reported having access included head injury support groups (3%) and head injury supported leisure programs (10%) (see
Table 5.12). Reasons for the low utilisation of these services are unknown. It may be hypothesised that the relatively high functioning participants in this study (i.e., 57% employed in full time work) did not feel the need to utilise these services. Alternatively, they might not be aware that the services existed or might not live near such services. In other TBI studies, the use of support groups as a coping strategy in the process of recovering from a TBI was reported to be very important to adults with TBI and their family members (Ergh et al., 2002; Knight et al., 1998; Newberry, 2001). However, inequity in support group distribution between rural and urban areas has been identified as a factor that resulted in differential access. According to a US-based study, only 17% of active TBI support groups were located in rural areas (Johnstone et al., 2002). A similar factor of inequitable support group distribution could be impacting upon access in this study. Further research is needed in this area.
5.3.2.3.1 Medical services
As stated above, the most frequent service reported to have been received by participants with TBI throughout their healthcare journey was medical service. According to the participants, medical services were provided primarily on an as-needed basis in both
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inpatient and outpatient rehabilitative settings (36% and 45% respectively; see Table 5.13).
As expected, medical services were more intensively provided in inpatient rehabilitation, where secondary TBI complications (e.g., spasticity, contractures, malnutrition) are managed, than in outpatient settings. This is consistent with TBI guidelines (British Society of Rehabilitation Medicine & Royal College of Physicians, 2003).
As part of the first questionnaire, participants were asked explicitly which medical service they accessed in an outpatient setting. Results appear in Table 5.14. It seems the majority of participants with TBI (77%) visited their general practitioner for their ongoing medical care, with the second most frequently accessed medical service being specialist reviews (58%). Very few participants (12%) visited a nurse or nursing practitioner to manage their ongoing medical needs.
Table 5.13 Frequency of Medical Services Accessed by Participants with TBI in Rehabilitation Settings
Frequency of medical services n %
Inpatient rehabilitation (n = 137) One-off service 7 5.1 As needed 49 35.8 Daily 34 24.8 Once every 2-6 days 13 9.5 Weekly 13 9.5 More than weekly 5 3.6 Missing data 16 11.7
Outpatient rehabilitation (n = 141) One-off service 12 8.5 As needed 64 45.1 Roughly weekly 8 5.6 Roughly monthly 36 25.5 Roughly 6 monthly 16 11.3 Other α 6 4.2 Missing data 1 0.7
α For breakdown of “other” data see Appendix K, Table 7.
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Table 5.14 Types of Medical Services Adults with TBI Reported Accessed as an Outpatient (n = 141)
Type of medical service n %
General practitioner 109 76.8
Medical specialist 81 57.7
Nurse 17 12.0
Other α 6 4.2
α For breakdown of “other” data see Appendix K, Table 8.
The decision to include nursing within the medical services category of outpatient rehabilitation in this study was deliberate. Adults with TBI access nursing services as outpatients, under the guidance of a medical practitioner, for assistance with medical conditions arising from their TBI (e.g., changing tracheostomy wound dressings, administering anti-thrombotic medication).
5.3.2.3.2 Allied health services
The second most frequent service accessed by participants across all stages of their continuum of care was allied health. Allied health services include therapy services provided by physiotherapists, speech pathologists, occupational therapists, dietitians and social workers (Australasian Faculty of Rehabilitation Medicine). Table 5.15 includes a breakdown of the individual services and the frequency with which they were provided, as reported by participants, in inpatient and outpatient settings.
As was expected, the most frequent allied health service provided in inpatient and outpatient settings was physiotherapy (95% of participants accessed this service in both settings), followed by occupational therapy in inpatient (93%) and outpatient settings (71%) and speech pathology (67% in inpatient rehabilitation and 46% in outpatient settings).
Social work and dietetic services were the least accessed services in both settings. The
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Table 5.15 Frequency of Access by Participants in Rehabilitation to Allied Health Services
Frequency of access to allied health services Physiotherapy Speech pathology Occupational Social work Dietetics α therapy B n % n % n % n % n % r Inpatient rehabilitation (n = 123) e I did not receive service 4 3.3 41 33.3 8 6.5 53 43.1 69 56.1 a Twice daily 19 15.4 2 1.6 7 5.7 1 0.8 0 0.0 k Daily 56 45.5 22 17.9 42 34.1 3 2.4 9 7.3 d Once every 2-6 days 21 17.1 22 17.9 24 19.5 17 13.8 8 6.5 o Weekly 11 8.9 22 17.9 24 19.5 24 19.5 10 8.1 w Other α 10 8.1 14 11.4 18 14.6 25 20.3 27 22.0 n Missing data 2 1.6 0 0.0 0 0.0 0 0.0 0 0.0 oOutpatient rehabilitation (n = 126) f I did not receive service 6 4.7 68 54.0 36 28.6 83 65.9 92 73.0 Daily 11 8.7 0 0.0 4 3.2 0 0.0 1 0.8 “ Once every 2-6 days 45 35.7 14 11.1 26 20.6 2 1.6 3 2.3 o Weekly 45 35.7 23 18.3 33 26.2 13 10.3 8 6.3 t Once every 8-29 days 9 7.1 5 4.0 10 7.9 8 6.3 4 3.2 h Monthly 3 2.4 3 2.4 5 4.0 5 4.0 8 6.3 β e Other 7 5.6 13 10.3 12 9.5 15 11.9 10 7.9 r ” data provided in Appendix K, Table 9. β Breakdown of “other” data provided in Appendix K, Table 10.
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reason for this is unknown, but it is particularly interesting given that social work and counselling were the services for which participants cited a greater need, in response to an open-ended question about additional services. For example, two participants wrote:
Better counselling might have prevented my marriage break up. (37a)
I needed someone to talk to. I was depressed and not forgiving myself, I felt guilty for falling asleep at the wheel. (111a)
5.3.2.3.3 Mental health services
The third most frequent service participants reported accessing throughout all stages of their continuum of care was mental health services. Mental health services as described in this research were provided by a psychologist, neuropsychologist or psychiatrist. The types of mental health service accessed by participants and the frequency with which they were provided in inpatient and outpatient rehabilitation settings are shown in Table 5.16.
The majority of participants reported accessing neuropsychology (72% in inpatients and 64% in outpatients), followed by psychology (37% and 53%) then psychiatric (12% and 15%) services. These services tended to be provided intensively in inpatient settings before becoming less frequent in outpatient rehabilitation (see Table 5.16).
5.3.2.3.4 Additional services requested
In the questionnaire participants were asked whether they wanted more or fewer services while in rehabilitation. Of the 137 participants who attended inpatient rehabilitation, 26 (19%) reported the need for more services while 6 (4%) reported receiving services they did not want (e.g., occupational therapy (106a)). Similarly, of the
142 people who accessed outpatient services, 24 (17%) reported the need for more services while 5 (4%) reported receiving more service than they wanted (e.g., psychology, speech
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therapy (205a)). A breakdown of the changes desired by participants, as analysed through content analysis of responses to the open-ended question, is provided in Table 5.17. Some of the desired changes shown in Table 5.17 are service related. They are listed in the table as they reflect the responses written by participants.
Table 5.16 Mental Health Services Accessed by Participants with TBI in Rehabilitation
Mental health service accessed by participants Inpatient Outpatient with TBI in rehabilitation rehabilitation rehabilitation (n = 97) (n = 87) n % n %
Type of service Neuropsychology 70 72.2 56 64.4 Psychology 36 37.1 46 52.9 Psychiatry 12 12.4 13 14.9 Don’t know 20 20.6 7 8.0
Frequency of service One-off service 17 17.5 10 11.5 Daily 10 10.3 8 9.2 Once every 2-6 days 18 18.6 24 27.6 Weekly 21 21.6 24 27.6 Less often than weekly 13 13.4 10 11.5 Don’t know 18 18.6 11 12.6
Table 5.17 Changes Desired in Rehabilitation Services
Changes desired in rehabilitation services Inpt. Outpt. rehab rehab
Services wanted but not received Need for additional services (i.e., greater numbers of 11 11 staff, increased frequency of services) Need for support 4 7 Improved infrastructure (i.e., availability of hydrotherapy 3 0 pool) Greater awareness/choice of services 2 0 Need for more information about available services 2 2 Improved communication 1 0 Enforce or remove restrictions imposed by staff on people 1 1 following TBI Greater staff knowledge and skill in the area of TBI 0 2 Increase role of family, friends and animals in 0 1 rehabilitation
Services received but not wanted Problems with general level of care provided by non- 1 0 specialist services Excessive services provided 1 2 No choice of services 0 1
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5.3.2.4 Involvement of Adults with TBI in Guiding Their Own Rehabilitation
Tables 5.18 to 5.20 document the involvement of participants with TBI in activities which helped guide their rehabilitation care. For example, Table 5.18 shows that just over
55% of participants who received inpatient rehabilitation in this study could remember taking part in regular progress meetings. Progress meetings are held in inpatient rehabilitation services to bring therapists, family members and a client together to discuss a client’s injuries, prognosis and progress to date, future goals and discharge planning. The client’s involvement in these meetings helps to inform them of their current status, likely improvement and future plans. Ultimately, it ensures clients’ active participation and involvement in planning their care.
Table 5.18 Attendance of Participants with TBI in Their Progress Meetings in the Inpatient Rehabilitation Setting (n = 137)
Attendance at progress meetings n %
Attended 75 54.7 Did not attend 47 34.3 Can’t remember 15 10.9
Another way clients can help guide their care is through active involvement with their therapists in setting goals. However, half of participants (50%) stated that they did not set any goals in inpatient rehabilitation. They reported that either therapists set the goals for them (42%) or they didn’t set any goals at all (7%). A more favourable finding occurred with regard to outpatient settings, with the majority of participants with TBI reporting they set their own goals with the support of their family and therapists (see Table 5.19).
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Table 5.19 Involvement of Participants with TBI in Goal Setting Throughout Rehabilitation
Involvement in goal setting Inpatient rehabilitation Outpatient (n = 137) rehabilitation (n = 141) n % n %
Yes, I set my goals by myself 29 21.2 38 26.8 Yes, I set my goals with help from my 40 29.2 75 52.8 family and therapists No, I didn’t set goals. My therapist set 58 42.3 16 11.3 them for me. No, I didn’t set any goals. 10 7.3 14 9.2
According to the BSRM and the RCP (2003), goal oriented rehabilitation programs have gained international acceptance as a means of demonstrating progress and improving communication. If a person with TBI, the family and the treating team are all working towards the same agreed goals, rehabilitation effectiveness and a satisfactory client outcome is said to be more likely. Given this statement and the numbers of participants reporting involvement in joint goal setting in this study, the effectiveness of their rehabilitation may be questioned.
In addition to client involvement in goal setting, another way clients can help guide their care is through joint discharge planning. However, not unlike the involvement of participants with TBI in goal setting, in inpatient rehabilitation, participants reported that decision making regarding their discharge was largely left to medical, allied health and mental health staff. According to frequency data tabulated in Table 5.20, over 56% of participants cited their therapists’ or doctors’ decisions as the reason for their discharge from inpatient rehabilitation.
The reported limited involvement of participants in guiding their own rehabilitation is of concern. According to the World Health Organization (1998), positive health outcomes are increased when people take an active role in their own healthcare.
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Table 5.20 Reported Reasons for Discharge From Inpatient Rehabilitation (n = 137)
Reported reasons for discharge from inpatient rehabilitation n %
Don’t know 12 8.7 I chose to go 27 19.7 Therapist’s/doctor’s decision 77 56.2 My goals were achieved 13 9.4 Other α 8 5.8
α For breakdown of “other” data see Appendix K, Table 11.
Researchers support the need for individuals to take control of their health (Newberry,
2001; Seligman, 1993; Stringer, 1999). Newberry (2001) stated that for people with an acquired brain injury to feel empowered, they must be involved in the decision making process throughout their healthcare. If they are not, their lack of control may result in learned helplessness (Seligman, 1993).
Learned helplessness or dependency is one of the major barriers to independence and empowerment. The “patient” or “sick” role often adopted by people in acute care has been described as one of dependency on others (MacPhail, 1998). When this occurs, control is transferred from the individual to others (i.e., healthcare providers). For clients to be empowered, control needs to be shifted from others back to individuals as they transition through their continuum of care (Newberry, 2001). To facilitate positive health outcomes, adults with TBI and their families must be able to participate in family meetings, select their own options for treatment, formulate their goals for rehabilitation, take responsibility for the achievement of those goals and contribute to decisions about appropriate times to cease therapy.
Newberry (2001) stated that people with an acquired brain injury need to be involved in the design and direction of their services, to ensure that services are responsible to them rather than to the needs of funders or healthcare providers. MacPhail (1998)
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reported that the “patient” model, wherein health professionals make all healthcare decisions, may be appropriate in the acute stage of people’s care (i.e., when their life is at risk) but it is not appropriate in residential and non-residential rehabilitation settings where the goal is gradual resumption of control over their life. According to Stringer (1999), paternalism, through use of the patient model, is the scourge of rehabilitation. Stringer also stated that people do not fail rehabilitation but that rehabilitation fails people. In rehabilitation, people should be empowered to depend on themselves and where possible, control their own lives, and programs should be designed that build self-esteem and maximise independence, not encourage learned helplessness (Seligman, 1993).
5.3.2.5 Transition Planning
Client discharge from an acute setting to inpatient rehabilitation is an important transition in their continuum of care, as is their transition from inpatient to outpatient rehabilitation and their move from direct outpatient services to ongoing monitoring. Tables
5.21 to 5.25 summarise the reports of participants directly related to transition planning.
5.3.2.5.1 Transition from acute care to inpatient rehabilitation
As stated in Section 3.2.2, adults with TBI are typically moved from their acute care hospital to an inpatient setting as soon as they are medically stable and fit for rehabilitation
(British Society of Rehabilitation Medicine & Royal College of Physicians, 2003).
However, once they are admitted to inpatient rehabilitation, clients occasionally need to return to acute care for follow-up specialist appointments, such as neurosurgery reviews.
Seventy two percent of participants with TBI in this study reported that they had been required to return to acute care for follow-up medical reviews (see Table 5.21). Of these participants, 20 (20%) reported needing to return for a one-off appointment, 29 (30%)
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reported needing to return to acute care weekly for different appointments (e.g., a neurosurgery review, followed by an orthopaedic review, etc.), another 26 (27%) reported needing to return approximately once a month, and 6 (6%) reported needing to return for review once every 6 months.
Table 5.21 Need for Participants with TBI to Transfer from Inpatient Rehabilitation to Acute Care for Medical Reviews (n= 137)
Transfer for medical reviews n %
Need to transfer (n = 137) Yes 98 71.5 No 39 28.5
Frequency of follow up appointments (n = 98) Roughly every week with different appointments 29 29.6 Roughly once a month 26 26.5 Once off appointment 20 20.4 Not sure 17 17.3 Roughly every 6 months 6 6.1
5.3.2.5.2 Discharge from inpatient services
Once clients have reached their goals in inpatient rehabilitation, they then make the transition to their home or supported accommodation, depending on their level of dependency. The majority (72%) of participants with TBI reported that they returned home, living either independently or with support from family, friends or professional carers (see
Table 5.22). This finding of a high rate of return home is not surprising, given that the questionnaires used in this stage of the study were mailed to the home addresses of participants recorded during their acute stay. This means that only adults with TBI who returned home following their continuum of care or who retained contact with their home address (e.g., through family or friends) would have received the questionnaire. It is therefore likely that the participants included in this study were either high functioning following their TBI or had good family support and could therefore return home. Other
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discharge destinations recorded by participants included hostel accommodation, disability housing, transitional care or nursing home.
The majority (73%) of participants reported that they were discharged from inpatient rehabilitation at the appropriate time. However, 20% of participants felt they had been discharged too early and 5% reported they stayed too long (see Table 5.22).
Table 5.22 Participants’ Discharge Destination and Readiness for Discharge (n = 137)
Discharge destination and readiness n %
Discharge destination Home 99 72.3 Transitional house 5 3.6 Disability housing 6 4.4 Nursing home 3 2.2 Hostel 1 0.7 Other 23 16.8
Readiness for discharge (n = 137) Yes 100 73.0 No, it was too early 27 19.7 No, I stayed too long 7 5.1 Missing data 3 2.2
Approximately 82% of participants reported being forewarned of their discharge date and being informed of the follow-up appointments on discharge. Eighty percent were told what services they would receive after discharge, yet only 79% of the participants reported being given the contact details of their inpatient rehabilitation service to call should any difficulties arise shortly after their discharge (see Table 5.23).
Given that participants had mixed involvement in progress meetings, goal setting and discharge planning, it is not surprising that their feelings on discharge varied.
Participants expressed their feelings on discharge by ticking as many of the prelisted feelings they felt applied (see Question 36, Appendix B). Participants also were able to list other feelings if they felt none of the prelisted feelings reflected their experience.
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Table 5.23 Participants’ Involvement in Planning for Discharge from Inpatient Rehabilitation (n = 137)
Informed of Informed of Informed of Given hospital discharge date follow-up discharge contact details appointments services on discharge Response n % N % n % n %
Yes 112 81.8 110 80.3 110 80.3 108 78.8 No 25 18.2 27 19.7 27 19.7 22 16.1 Can’t 0 0.0 0 0.0 0 0.0 7 0.5 remember
As can be seen in Table 5.24, the majority of participants felt that they were ready
(55%) and excited (54%) upon discharge. Other commonly reported feelings included anxiety, fear and fatigue. Participants were then asked why they felt that way. These data were subsequently analysed using content analysis, the results of which are displayed in
Table 5.25. The table lists the most common reasons and provides illustrative quotes of typical participant responses.
Table 5.24 Reported Feelings Experienced by Participants with TBI on Discharge (n = 137)
Reported feelings n %
Ready 75 54.7 Excited 74 54.0 Anxious 58 42.3 Scared 39 28.5 Tired 30 22.9 Other α 19 13.9
α Breakdown of “other” data provided in Appendix K, Table 12.
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Table 5.25 Most Common Reasons for Reported Feelings Experienced by Participants with TBI on Discharge
Reasons for reported feelings, and examples Number of references
Wanted to return to home 53 I wanted to be in my own environment, where I was comfortable, and home with my family (36a).
Transition planning such as weekend leave was a comfort before returning 41 home I started improving when I did overnight stays at home (149a).
Wanted to return home to family and friends 20 I missed my family and friends (33a).
Concern over ability to learn to cope with TBI once discharged 8 [I was] worried I couldn’t cope without help (179a).
Wish for independence 5 I was anxious and curious to discover how I would manage to function with the loss of one eye. This included travel. I now rely on public transport. I previously had my own car (183a).
Concerns related to care coordination 4 I was discharged from [the acute hospital] after 5 days. I was very disoriented. My solicitors have said [that the acute hospital] stated that I discharged myself. I couldn’t walk straight! [There was] no mention of rehab services (202a).
Reassurance given general level of care received in hospital-based services 3 I was motivated to get home and continue my recovery. The team were very good in making sure I was clinically ready to go home and wasn’t discharged prematurely with subsequent risk or relapse (26a).
Reached goals for rehabilitation 2 I was active and had reached the goals for my health (122a).
Reported need for ongoing support 4 I was all alone at home [with] no help. [I had] no one to help me with showering, house duties, cooking, [or] shopping (158a).
Happiness to be at a point where discharge from services is appropriate 2 [I was] happy to get my life back (45a).
Administrative complications related to funding 1 [I] couldn’t do stuff. [I was] unable to get meals on wheels as the compensable service doesn’t pay it. When council knew I was being funded by a compensable service I wasn’t even allowed to pay for myself (104a).
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Table 5.25 cont.
Reasons for reported feelings, and examples Number of references
Discharge restrictions complicating discharge from hospital-based services 1 [I] was not allowed to travel home until [my] halo was removed (35a).
Impact of location had complicated hospital admission 1 [I] had never been in a hospital with this sort of injury before. [My] family was 4 hours away, so I was on my own (55a).
5.3.1.6 Roles of Participants with TBI in Their Community Following Formal
Rehabilitation
Reintegration and participation in the community following discharge can be problematic, as people with TBI attempt to return successfully to their pre-injury life
(Avesani et al., 2005; Vickery, Gontkovsky, & Caroselli, 2005). Problems which can arise relate to return to work, family roles, and engagement in recreation and leisure activities.
According to the participants with TBI in this study, 57% returned to some degree of paid employment following their discharge (see Table 5.1) and 78% reported engaging in leisure and recreation (Table 5.26). The majority of participants (68%) reported that they felt supported in the community in their return to work, leisure and pre-injury life (see
Table 5.27). The participants who felt supported reported that they sought their support primarily from family, followed by friends, carers and then their case manager or key worker (Table 5.28).
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Table 5.26 Leisure Activities in Which Participants with TBI Engaged (n = 202)
Leisure activities n % Playing sport 116 57.4 Spending time with family and friends 15 7.4 Attending cinema or watching TV 10 5.0 Engage in craft activities 10 5.0 Playing or listening to music 6 3.0 Gardening 6 3.0 Reading 6 3.0 Travelling 6 3.0 Volunteering 3 1.5 Gambling 2 1.0 Shopping 1 0.5 Religion 1 0.5 No comment 58 28.7
Table 5.27 Engagement in Leisure Activities and Feelings of Being Supported as Reported by Participants with TBI (n = 202)
Response Participating in leisure Feelings of being supported n % n % Yes 158 78.2 138 68.3 No 38 18.8 38 18.8 Missing data 6 3.0 26 12.9
Table 5.28 Sources of Support Reported by Participants with TBI (n = 202)
Sources of support reported by participants with TBI n % Family 164 81.2 Friends 109 54.0 Carers 31 15.3 Case manager 17 8.4 Other α 33 16.3
α For breakdown of “other” data see Appendix K, Table 13
5.3.1.7 Summary
The data discussed above relate to the first research question proposed in this study,
What is the reported continuum of care experienced by adults with TBI in Victoria? A summary of the findings related to this question is provided below.
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Only 41 participants with TBI (20%) reported accessing services in line with recommendations made by TBI rehabilitative guidelines. Clinical care guidelines recommend initial acute care, followed by residential rehabilitation, non-residential rehabilitation and longer term community support for adults following TBI (New Zealand
Guidelines Group, 2006). On the basis of participants’ recollections, it appears that adults with moderate to severe TBI in Victoria do not consistently receive services in line with clinical care recommendations.
Participants with TBI reported greatest access and degree of satisfaction with acute care services. Degree of access and satisfaction with services reduced as they moved through their continuum of care. Sixty six percent of participants reported receiving specialist inpatient neurorehabilitation services in line with clinical care guidelines.
However, only 28% of participants reported receiving home-based context-specific therapy once discharged from residential rehabilitation. Participants most frequently reported receiving medical care, followed by allied health services and mental health services, in all stages of their care. Interestingly, mental health services were noted to be the least accessed service throughout the continuum of care, yet the need for formal support and counselling following TBI was most frequently reported by participants.
In keeping with previous studies (see for example, Sample, Tomter, Johns, 2007), fewer than half of participants had access to any form of care coordination (i.e., key worker or case manager) during their healthcare journey. Adults with TBI also reported very little involvement in leading their own care, including attendance at progress meetings, involvement in setting goals and discharge planning, particularly in inpatient rehabilitation.
Finally, participants reported adequate community reintegration, as defined by return to work and involvement in recreation and leisure activities. In addition, most
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participants felt that they were supported on discharge. However, this support was provided primarily by family and friends, with few participants reporting that they accessed formal support groups for people with head injuries. It is unknown whether participants’ lack of participation in support services was a result of lack of awareness or limited provision and accessibility of these services. Further research is needed in this area.
5.3.3 What Is the Recollected Impact of Location on the Continuum of Care
Experienced by Adults with TBI in Victoria?
This section addresses the second research question, which related to whether participants with TBI believed the continuum of care they experienced was affected by the degree of rurality of their home town. The results addressing this second question are presented in three sections: degree of rurality of services accessed, impact of rurality on acute care and impact of rurality on outpatient service provision. The data presented in these sections were extracted from the first questionnaire, completed by participants with
TBI. As in the previous result sections of this chapter, descriptive statistics of closed-ended questions and content analysis of open-ended questions are presented.
5.3.2.1 Degree of Rurality of Services Accessed
The first table presented in this section, Table 5.29, relates to the degree of remoteness, as defined by the Accessibility/Remoteness Index of Australia (ARIA)
(Australian Bureau of Statistics, 2001), of participants’ home towns, as well as the town in which their initial acute hospital and inpatient rehabilitation hospital was located. As can be seen, over 86% of the participants lived in and accessed services located in highly accessible regions of Victoria.
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Table 5.29 Degree of Remoteness of Home Towns and Services Accessed by Participants
Degree of remoteness Home town Initial acute Inpatient (n = 202) hospital rehabilitation (n = 202) (n = 137) n % n % n %
ARIA classification Highly accessible 174 86.1 185 91.6 132 96.4 Accessible 20 10.0 11 5.4 0 0.0 Moderately accessible 1 0.5 0 0.0 0 0.0 Remote 0 0.0 0 0.0 0 0.0 Overseas 2 1.0 1 0.5 0 0.0 Missing data 5 2.5 5 2.5 5 3.6
The ARIA is an index based on a geographical methodology in which remoteness is defined on the basis of road distance from any point to the nearest town in each of five population size classes. The population size of the service centre is used as a proxy for the availability of a range of services and road distance is used as a proxy for the degree of remoteness from those services (Australian Bureau of Statistics, 2001). The main discriminator in terms of the difference between levels of service centre was revealed by the number and size of education and health services provided.
The index divides Australia into five categories: highly accessible (a location with relatively unrestricted access to services), accessible (a location with some restriction to services), moderately accessible (a location with significant restricted access to services), remote (a location very restricted from services) and very remote6 (a location with little access to services) (Commonwealth Department of Health and Aged Care, 2001).
One of the strengths of using ARIA as a methodology for measuring remoteness in this study is that the ARIA index value of an area is stable over time. The ARIA index value of an area does not change unless the population in one or more of the service centres
6 The ARIA index very remote was not included in this study as Victoria has no very remote areas (Australian Bureau of Statistics, 2001) 229
changes significantly, resulting in a reclassification to a different service category
(Australian Institute of Health and Welfare, 2004). The robustness of the ARIA measure is enhanced by the wide range in population sizes for different service centres (i.e., service centre A = population >250,000, service centre B = 48,000 – 249,999, service centre C =
18,000 – 47,999, service centre D = 5,000 – 17,999, service centre E = 1,000 – 4,999
(Australian Bureau of Statistics, 2001)).
A weakness of the ARIA methodology is that it can result in dissimilar areas being given the same remoteness score. For example, in 1999 the city of Dubbo and the shire of
Urana (with populations in 1996 of 36,701 and 1,497 respectively) had almost identical
ARIA scores and were therefore included in the same ARIA class (i.e., accessible). The city of Dubbo was in that class because it is a large regional centre, whereas Urana was in that class because of its moderate proximity (i.e., approximately 100 km by road) to Wagga
Wagga and Albury. Nevertheless, accessibility to health professionals and hospitals in these two areas is quite different (Australian Institute of Health and Welfare, 2004).
Another disadvantage of the ARIA classification is that it defines 81% of the population as living in the most accessible class (i.e., highly accessible). This leaves 19% of the population to be shared between the other four areas, making statistical comparison less reliable because of the small population sizes in these areas (Australian Institute of Health and Welfare, 2004). In fact, the uneven distribution of participants across ARIA categories in this study (see Table 5.29) meant that I was unable to conduct cross-tabular or inferential statistics to investigate the relationship between access to services and location. If these analyses had been conducted the risk of a type two error (i.e., acceptance of a difference between variables when a difference does not exist (Portney & Watkins, 2000)) would be
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high. Therefore, only descriptive statistics reporting trends in participant access are reported in this section.
The ARIA was chosen as the accessibility and remoteness measure in this study because it is sponsored by the Australian Department of Health and Aged Care. It is also the main accessibility index currently used in policy development, implementation and evaluation within Australia (Department of Health and Ageing, 2001). Therefore the results of this study can be compared to existing data.
The section above presented data on the degree of remoteness of services accessed, based on the ARIA index. The following section extends these data by discussing the impact of geographical location on experiences of healthcare for participants with TBI.
5.3.2.2 Impact of Rurality on Acute Care and Inpatient Rehabilitation
As was seen in Table 5.29, only 5% of participants with TBI in this study reported being admitted to an initial acute hospital in an accessible area before being transferred to
Melbourne for specialist acute care. This is not surprising, given the assertion by the ABS
(2001) that the larger the town, the greater the access to specialist consultants and the most advanced medical procedures. Consequently, the assumption may be made that larger centres with greater populations to support specialty fields are essential in the acute stages of TBI rehabilitation where the focus of clients’ care is to save lives (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003).
Clinical care guidelines also suggest that context-specific therapy is the most effective way to achieve earliest functional client gain and generalisation of skills following acute care (British Society of Rehabilitation Medicine & Royal College of Physicians,
2003). It is therefore a matter of concern that the nearly all (96%) inpatient rehabilitation
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services continue to be provided in highly accessible areas. This suggests that a proportion of rural TBI clients will not receive context-specific services.
Currently in Victoria there are four inpatient rehabilitation programs claiming specialty in adult neurological rehabilitation outside of Melbourne. These services are based in the four large regional centres of Bendigo, Geelong, Traralgon and Ballarat. These centres have population bases of close to or in excess of 100,000 people (City of Ballarat,
2009; City of Greater Bendigo, 2009; State Government Victoria Australia, 2009a, 2009b).
Although these centres have the population base to support specialty services, adults with
TBI who wish to access inpatient rehabilitation programs, in line with clinical care guidelines, but who live outside these centres, are forced to temporarily relocate, making the aim of implementing context specific-therapy unachievable.
5.3.2.3 Impact of Rurality on Outpatient Service Provision
Table 5.30 shows the number of participants with TBI who needed to travel from their home town to another town to access outpatient rehabilitation services. These data show that 69 (67%) participants were required to travel to another town to access services.
The number of kilometres participants needed to travel varied from less than 10 km to more than 500 km (see Table 5.31).
Table 5.30 Need to Travel to Another Town to Access Outpatient Services (n = 103)
Response n % Need to travel 69 67.0 No need to travel 34 33.0
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Table 5.31 Distance Adults with TBI Were Required to Travel to Access Outpatient Rehabilitation Service (n = 69)
Distance n % <= 10km 11 15.9 11-20km 24 34.8 21-40km 16 23.2 41-100km 15 21.7 101-200km 1 1.4 201-500km 1 1.4 > 500km 1 1.4
The high percentage of participants (26%) who were required to travel over 40 km to access services is concerning, given Eyles and Woods (1983) assertion that the further away a health service is located from consumers’ homes the less likely they are to access it.
Wilson, Lincoln and Onslow (2002) supported this assertion, reporting that health professionals believed that distance alone was a factor which prevented the access of some consumers to health services. Further research is needed in this area to investigate whether distance affects the likelihood of adults with TBI accessing services.
The majority of participants reported that they either took a taxi (42%) or travelled with family and friends (38%) to rehabilitation services. Others walked, drove or took public transport (see Table 5.32). The high number of participants reliant on others to provide transport to access services is not unexpected, given that driver’s licences of adults with TBI are suspended following their injury (Motor Accident Authority NSW, 2008).
Table 5.32 Mode of Transport Used by Adults with TBI to Travel to Outpatient Rehabilitation Services (n = 103)
Mode of transport N % Caught a taxi 43 41.7 Got a lift with family/friends 39 37.8 Walked 7 6.8 Drove 6 5.8 Other α 5 4.9 Caught public transport 3 2.9
α For breakdown of “other” data see Appendix K, Table 14.
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5.3.2.4 Summary
The data discussed in this section of Chapter 5 relate to the second research question, What is the recollected impact of location on the continuum of care experienced by adults with TBI in Victoria? A summary of the findings related to this question are provided below.
Eighty six percent of participants reported living in towns designated as highly accessible areas before they sustained their head injury. Therefore, it is of no surprise that
92% of participants were admitted only to highly accessible health services across all stages of their continuum of care. What is concerning, however, is the distance participants reported they needed to travel to access outpatient rehabilitation services, regardless of their level of geographic accessibility. In fact, over 26% of the participants reported that they were required to travel over 40 km to access services once discharged from a hospital setting. This is worrying, given the likelihood that adults with TBI have limited access to transport when they return home. Adults with TBI typically have their driver’s licences suspended following their head injury (Motor Accident Authority NSW, 2008) leaving them to rely on public transport to access services. This can be problematic, particularly for those residing in rural areas where services are often limited (Murphy, 2004; Strasser et al.,
1994). Thus adults with TBI are often either dependent on lifts from carers, family or friends, or are required to pay privately for transport to access services.
As stated earlier, because of the disproportionate number of participants in this study residing in highly accessible areas, no direct relationship between location and ability to access services was explored. However, this is an area that warrants further investigation, particularly if distance appears to affect access to and utilisation of services.
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5.3.4 What Is the Impact of Healthcare Funding on the Continuum of Care
Reported by Adults with TBI in Victoria?
The results for the third research question, ‘What is the impact of healthcare funding on the continuum of care reported by adults with TBI?’ are presented in five sections: healthcare funding models reported by participants, relationships identified between funding allocation and cause of TBI, funding allocation and length of acute care, funding allocation and rehabilitation received, and funding allocation and reported case management services received.
Data presented in this chapter were derived from cross tabulations. Cross tabulation is a common approach implemented in questionnaire data analysis to describe the pattern between two or more sets of responses (Portney & Watkins, 2000).
5.3.3.1 Healthcare Funding Models Reported by Participants
Table 5.33 shows a breakdown of the models by which participants recollected being allocated funding. As can be seen, the majority of participants (57%) were allocated compensable funding. These compensable funds were provided primarily by the Transport
Accident Commission (TAC) (51%) and WorkCover (6%). The high level of compensable participants in this study is representative of the adult TBI population as a whole and is not surprising, given that the majority of TBIs sustained occur as a result of a motor vehicle accident (MVA) (O'Connor, 2002). As stated in Section 3.7.2, the care for people who sustain a TBI as a result of an MVA in Victoria is funded by the TAC, which pays “the reasonable costs of medical treatment, rehabilitation services, disability services, income
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assistance, travel and household support services” that a person may need as a result of TBI
(Traffic Accident Commission, 2003).
Table 5.33 Funding Models Participants with TBI Reported Their Health Services Accessed to Fund Their Care (n = 202)
Response n %
Public funding 64 31.6 Private funding 14 6.9 Compensable 115 56.9 TAC 102 50.5 Workcover 13 6.4 Other α 5 2.5 Don’t know 4 2.0
α For breakdown of “other” data see Appendix K, Table 15
Other participants had their services paid for by public (32%) or private funds (7%).
Private funds accessed to pay for participants’ care included private health insurance bodies such as the Hospital Benefits Association (HBA), Medibank Private and Australian Unity.
5.3.3.2 Patterns Identified Between Funding Allocation and Cause of TBI
As stated above, the majority of participants received compensable funding. When cross tabulation was undertaken to compare the patterns between funding and the services received, a number of trends were noted. Not surprisingly, allocation of compensable funding appeared to be related to the initial cause of the TBI. For example, 86% of participants who sustained their TBI in a road accident were allocated compensable funding
(see Table 5.34). Given the Transport Accident Commission’s (2007) commitment to funding care following head injuries sustained either on a Victorian registered road or in a
Victorian registered car, this relationahip between cause of TBI and funding allocation was expected.
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Table 5.34 Relationship Between Cause of TBI and Funding Allocated
Funding Model Cause of TBI Road accident Fall Assault Other % % % % Public funding 7.9 39.7 14.3 36.5 Private funding 0.7 38.5 23.1 30.8 Compensable funding 85.8 4.4 0.0 9.7 Other 20.0 0.0 40.0 40.0
5.3.3.3 Patterns Identified Between Funding Allocation and Length of Acute Care
No obvious relationship was noted between funding and length of stay in acute care
(see Table 5.35).
Table 5.35 Funding Allocation by Reported Length of Acute Stay
Funding allocated Acute Length of Stay Overnight < 1 week 1 week > 1 week Other length of time
Public funding 4.8 17.5 7.9 46.0 15.9 Private funding 0.0 30.8 15.4 38.5 15.4 Compensable funding 3.5 5.3 11.5 47.8 26.5 Other 0.0 10.0 20.0 40.0 0.0
5.3.3.4 Patterns Identified Between Funding Allocated and Rehabilitation Services
Received.
However, trends were noted when the patterns between funding allocation and rehabilitation services received were examined. For example, allocation of compensable funding appeared to be related to increased rates of receiving services in inpatient and outpatient rehabilitation settings. Indeed, 71% and 81% of participants with compensable funding reported accessing inpatient rehabilitation services and outpatient rehabilitation services, respectively (see Table 5.36). Those who were allocated public funding appeared
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to be the least well served: only 49% of publicly funded participants reported accessing inpatient rehabilitation, with 52% reporting being able to access outpatient services. Just over 60% of those who were allocated private funding reported receiving both inpatient and outpatient rehabilitation services.
Table 5.36 Funding Allocation by Reported Rehabilitation Services Received
Funding allocated Received services Received Did not receive Missing data
% % %
Inpatient rehab. Public funding 49.2 49.2 1.6 Private funding 61.5 38.5 0.0 Compensable 70.8 27.4 1.8 funding Other 20.0 80.0 0.0
Outpatient rehab. Public funding 52.4 42.9 4.8 Private funding 61.5 38.5 0.0 Compensable 81.4 16.8 1.8 funding Other 80.0 10.0 10.0
These findings are congruent with those of Nabors et al. (2002) in a US study.
They found that the poorer the healthcare payer source (e.g., limited private health insurance or public funds), the less access to resources for the person with TBI. Nabors et al. stated that “persons who sustain a TBI who have limited insurance should be less likely to receive outpatient therapy, vocational services, access to transitional living, adequate transportation and equipment” (p. 1047).
In another study, Rosenthal, Dijkers, and Harrison-Felix (1996) found that a lack of resources post-injury was associated with lower total community integration for people with TBI one year post-injury, as measured by the Community Integration Questionnaire
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(Kaplan, 2001). These findings suggest that limited financial resources may directly impact upon client outcomes. Further research is required to examine this area more fully.
5.3.3.5 Patterns Identified Between Funding Allocation and Case Management Services
Received
There appeared to be a pattern in this study between the funding allocated and the case management services received (see Table 5.37). Over 56% of compensable participants recollected receiving case management services compared to 31% of participants allocated private funding and 28% of those allocated public funding. It is thought that this relationship may once again be related to the Transport Accident
Commission’s (2008) policy for the allocation of case management services. Any TAC client who is eligible for disability services is eligible to receive case management services.
Case management through TAC is a time limited, episodic service. However, it ensures that
TAC clients receive the specific expertise of a case manager, to assist with planning discharge from hospital into the community; transition planning; re-establishing clients’ roles within the community, at home, in school, at work and in leisure activities; proactive contingency planning and crisis intervention; and developing self-management skills and strategies (Traffic Accident Commission, 2008).
Table 5.37 Funding Allocation by Reported Case Management Services Received
Funding allocation Received case Didn’t receive Don’t know management case (n = 86) management (n = 40) n % n % n %
Public funding 18 28.1 18 28.1 4 6.3 Private funding 4 30.8 5 38.5 0 0.0 Compensable funding 64 56.1 14 12.3 26 22.8 Other 0 0.0 3 33.3 3 33.3
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5.3.3.6 Summary
The data discussed in this section relate to the third research question, What is the recollected impact of funding on the continuum of care experienced by adults with TBI in
Victoria? The relationships between cause of TBI, length of stay in the acute setting, rehabilitation and case management services received, and funding were explored. Patterns of relationship between cause of TBI and funding were noted, as were patterns between funding allocation and ability to access rehabilitation and case management services.
Some of these patterns could be accounted for by the policies of funding providers’ policies (e.g., the TAC commitment already described). However, the inequities which appear to arise as a result of funding allocation are of concern, particularly given the World
Health Organization’s assertions that health services should be available to all people who choose to access them, that people should have equal access to the services provided for equal need, and that the level and quality of care of the services provided should be consistent regardless of a person’s social location. Further research is required to establish more conclusively the impact of funding on people’s ability to access healthcare services following TBI.
5.3.5 What Other Reported Factors Influence the Continuum of Care Reported
by Adults with TBI in Victoria?
The fourth and final research question addressed in this chapter seeks to identify factors other than location and funding which might have impacted upon the continuum of care experienced by the participants. The data presented in this section reflect content analysis of all open-ended questions from the first questionnaire. This section presents
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content categories which were repeatedly cited by participants with TBI, regardless of the question asked.
From my previous clinical experience and review of TBI literature, I suspected that location and funding influenced the continuum of care experienced by adults following
TBI. These two factors therefore formed the basis of four of my eight research questions
(see research Questions 2, 3, 5 and 6 in Chapter 4). However, I acknowledged that other factors were also likely to affect participants’ experiences. It is the aim of this section to explore these other factors from the perspectives of adults with TBI in Victoria.
Table 5.38 lists factors repeatedly cited by adults with TBI through their continuum of care, the most frequent of which were concerns regarding the quality of care provided throughout their healthcare journey, the wish to return home and continue life as normal, the important role of healthcare staff in promoting or inhibiting their recovery, the need for additional services and for greater access to information, the importance of transition planning, and the role played by family and friends in their recovery.
Table 5.38 Factors Cited by Participants with TBI Which Influenced Their Continuum of Care
Factors and examples Number of Number of participants references to mentioning factors factors overall
Satisfaction with the quality of care provided 128 243 I was anxious on discharge from inpatient rehabilitation. I was worried about the quality of [the] outpatient care I would receive. I had made a lot of progress and didn’t want it to come to a stop (45a).
Wish to return to perceived responsibilities (i.e., role within 64 69 family, return to work) I felt happy to get home as I was feeling so sorry for my family (it was a 50 min – 1 hr trip). They came to visit me every night. My eldest daughter was doing year 12 and preparing for exams. I just felt so bad for them all (11a).
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Table 5.38 cont.
Factors and examples Number of Number of participants references to mentioning factors factors overall
Satisfaction with perceived level of competence of staff 61 118 working in area of TBI The staff at the community mental health clinic were generally very skilled and had a good understanding of my illness (32a).
Need for additional services (e.g., employment of more staff or 57 91 provision of greater number of therapies) There were not enough health services. I was very disappointed. I had so many questions to ask but no help was provided. One time services is not enough, because you need more explanation [as to] why and what is the reason (25a).
Transition planning through the continuum of care and overall 50 53 care coordination I was motivated to get home and continue my recovery. The team were very good at making sure I was clinically ready to actually do this and [that I wasn’t] discharged prematurely with subsequent risk or relapse (26a).
Satisfaction with role of family, friends and animals played in 47 58 rehabilitation When my family and friends came to visit me it made me feel very happy (31a).
Satisfaction with outcome following TBI 35 42 [I] was expected to be paralyzed because of spinal injuries. [The] orthopedic surgeon, did an excellent job. [I] can now walk with sticks or a frame. Was expected to die when [I was] in a coma but now [I am] doing well (199a).
Need for support 33 41 I came to trust and rely on my case manager. She was wonderful. I still miss her and wish I had her to talk to (197a).
Impact of staff on outcome (i.e., ability to motivate participants, 31 42 assistances in setting attainable goals) I went in on a stretcher and walked out. I feel this was due to the hard work put in by the staff at the rehab hospital (186a).
Negative disruptions to continuum of care 29 34 I was left without knowing what the staff would do next or where I would go. [There was a] lack of communication (67a).
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Table 5.38 cont.
Factors and examples Number of Number of participants references to mentioning factors factors overall
Improvement in TBI sequelae allowing participant autonomy 25 27 When I entered the rehab hospital I was confined to bed and thought my life was in shambles, but with my perseverance and [the] hard work from staff, I walked out the door ready to continue my rehab journey in a much more positive frame of mind (58a).
Appropriate infrastructure 24 32 [They needed] better equipment with wider emergency trolleys. I didn’t feel secure. Being a bit larger felt like I would just roll off. [Also hospital needed] drinking implements for [people with] spinal injuries (122a).
Ability to cope with TBI impairment 24 28 They helped me deal with my problems. [My] post-traumatic amnesia, highs and lows (66a). Communication between staff, service providers, participants 20 24 and their family
Information added to my understanding of the neurological process going on in the recovery phase, and what to expect. [The information was] all good it helped give me a feeling of control and involvement. [The] opposite of feeling like a laboratory rat (145a).
Consideration of the person with the TBI in rehabilitation 20 24 planning
The staff were kind, gentle, caring and understanding. Everything a patient needs to even begin to feel better. They were honest with me (27a).
Need to advocate for service 7 9 We felt that sometimes if we didn’t talk then we were forgotten. Therefore mum was chasing everyone up (138a).
Awareness, choice and eligibility for services 6 6 I had no choice of services really (61a).
5.3.4.1 Summary
The data presented above related to the fourth research question, What other reported factors influence the continuum of care reported by adults with TBI in Victoria?
The results indicated that a number of factors, besides location and funding, appeared to
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influence participants’ experience of the continuum of care. These factors included concerns regarding quality of care, a wish to return to previous responsibilities, satisfaction with perceived skills of treating teams, the need for more services, better communication between services and additional information, a wish for coordinated transition between continuum of care stages, the importance of the role of family and friends in rehabilitation, satisfaction with outcome following treatment, the need for support, and the need to advocate for services. These factors are further discussed and triangulated with the perspectives of significant others and the results of the second stage of this research (see
Chapters 6, 8 and 9).
5.4 Discussion
The majority of adults with TBI involved in this research reported being able to access acute, inpatient and outpatient rehabilitation services. This level of reported access seems appropriate when taken at face value, in that all participants received acute care, 61% of participants received inpatient rehabilitation and 70% received outpatient rehabilitation.
However, upon closer inspection, just over half of all participants reported accessing specialist TBI services, with fewer than 30% of participants reporting that they received context-specific outpatient services. These findings indicate significant variations in service provision and delivery when compared to the recommendations of existing clinical care guidelines.
Furthermore, the reported low levels of participants’ involvement in guiding their care is concerning. Surprisingly, regardless of the limited involvement in guiding their own care, participants’ level of satisfaction with services, particularly those provided in residential settings, remained strong.
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Consistent with findings from other studies, most participants with TBI reported needing to travel for services (Harradine et al., 2004; Murphy, 2004). This finding is not surprising, given clients’ needs to receive outpatient rehabilitation services. It is worrying, however, that over half the participants in this study reported needing to travel to another town to access these services, the majority of which appeared to be located in highly accessible areas with the population base to support them. Although I acknowledge the need for specialist services to be situated in areas where they will be most highly utilised, travel to these services is difficult for TBI survivors who routinely have their licenses suspended for up to a year following the onset of TBI (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; Motor Accident Authority NSW, 2008).
Participants reported being driven to services by family, friends or taxi. Once again, this finding is not unique (Bourke, 2001; Strasser et al., 1994). However, the use of this strategy was problematic for the 8% of participants who were required to travel over 100 km to access services. In these cases, a process such as “distance decay7” (Eyles & Woods,
1983), as well as the consideration of time and cost, may be factors influencing adults with
TBI and their families when they contemplate services. This issue is discussed further in subsequent chapters.
An examination of patterns existing between services received, length of stay in services, and funding was undertaken. The findings indicated variations in access to rehabilitation and case management services dependent upon funding allocation, although no relationship pattern between funds and reported length of stay was noted. This may indicate that clients’ reported that funding allocation affected access to services, not
7 Distance decay is a term used to refer to the fact that the further away a health service is located from a consumers home, the less likely they are to access it (Eyles & Woods, 1983; Wilson, et al., 2002).
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provision of services once admitted. The impact of allocated funding on access to services for adults following TBI requires further investigation.
The findings reported in this chapter have a number of important clinical implications which should be considered when planning services in consultation with adults following TBI. The first of these relates to the fact that participants reported adequate access to TBI services following head injury. However, the services they received were perceived to be non-specialist, with limited flexibility as to appropriate methods of service delivery. The efficacy of providing such rehabilitation services can be questioned.
According to clinical care guidelines, the provision of specialist community-based, context- specific rehabilitation is essential to achieve a maximum degree of return to pre-morbid level of functioning for adults with TBI (Khan et al., 2003).
Participants also reported playing very minor roles in guiding their own care. A limited role of healthcare consumers in guiding their care may be acceptable in acute settings where medical management is key. In rehabilitation settings, however, where the aim is achieving client goals (British Society of Rehabilitation Medicine, 2003), participants’ reported limited involvement is of concern. The empowerment of clients and their families to manage their own care in hospital-based settings is important, not only to ensure that therapy targets individual needs but also to ensure that once discharged, people with TBI and their families have the skills and information needed to continue to access services as appropriate. This is particularly important given the limited access to case management services which participants reported in this study.
Participants’ reported requirement to travel to services also needs to be considered in service planning, particularly if the process of distance decay affects clients’ prioritisation of the need for services. This aspect requires further examination.
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Finally, the dependency of services received on healthcare funding needs to be considered for service allocation. If TBI services are to be provided equitably to all
Victorian adults following TBI, and in line with clinical care guidelines, the services provided must be available to all those who choose to access them, regardless of funding.
Given the healthcare funding model currently utilised in Victoria, it is unlikely that this will be the case, as financially restricted health services prioritise compensable and private clients because of their potential to generate hospital income (McAuley & Menadue, 2007).
To resolve this conflict, the Australian Centre for Policy Development (2007) advocated that universalism should be restored and embedded. In this context, the term universalism simply means that regardless of means or location, all people should have access to the same professional staff, clinics, pharmaceuticals and other resources.
According to this Centre, a universal system would not only ensure fair access to health services; it is also the most affordable in terms of private and public spending. A universal system is not necessarily a free system: people in different socioeconomic groups may pay different amounts to have access to the universal system, but the wealthy and the poor should not have separate providers. All should share one, high quality system (McAuley &
Menadue, 2007). This area is further discussed in Chapter 10.
5.5 Conclusion
In this chapter I have outlined the results from the first questionnaire in Stage 1, addressing the first, second, third and sixth research questions of the study (see Chapter 4) reported from the perspective of adults with moderate to severe TBI. These research questions addressed the reported continuum of care experienced by adults with TBI, the impact of location on the continuum of care experienced, the recollected impact of funding
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on the continuum of care experienced, and other reported factors which appear to have influenced or been influenced by the continuum of care experienced. The results of these questions have been discussed briefly and the implications of the findings listed. The following chapter addresses these questions from the perspective of significant others of adults with TBI, the results of which are triangulated with the data above and further discussed in Chapter 6.
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CHAPTER 6
STAGE 1: REPORTED CONTINUUM OF CARE EXPERIENCED BY THE
SIGNIFICANT OTHERS OF PEOPLE WITH TBI
6.1 Introduction
Chapter 5 documented the recollected experience of adults with TBI through their continuum of care. This chapter tells a similar story but from the perspective of significant others. Consideration of significant others’ perspectives is not uncommon in TBI research
(Claude Blais & Boisvert, 2005; Degeneffe, 2001; Knight et al., 1998; Wells et al., 2005).
Previous researchers have queried the reliability of studies focused purely on the recollections of adults with TBI. The reliability of such recollections has been said to be in part influenced by the severity of the TBI. Individuals with moderate to severe TBI, such as those included in this study, have been reported as having varying combinations of neurological, physical, behavioural and cognitive impairments which impact upon recall
(Sbordone, Seyranian, & Ruff, 1998). Therefore, to increase the ecological validity of reported experiences of care, TBI researchers (see for example, Cusick, Brooks, &
Whiteneck, 2001) recommend that information be obtained both from adults with TBI and from their significant others.
This chapter, containing data from the first stage of the research, not only allows comparison of recollections of adults with TBI and their significant others; it also allows unveiling of the experiences of significant others when accessing healthcare services with their family member or friend with a TBI, and the factors which impact upon their ability to do so. Specifically, the data reported in this chapter address the following research questions:
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1. What is the reported continuum of care observed and experienced by the
significant others of adults with TBI in Victoria?
2. What is the recollected impact of location on the continuum of care
experienced by the significant others of adults with TBI in Victoria?
3. What other reported factors influence the continuum of care as recollected by
the significant others of adults with TBI in Victoria?
These research questions are also addressed from a qualitative perspective in the second stage of the research (Chapter 8).
6.2 Method
A detailed discussion of the procedure implemented in this stage of the study was provided in Chapter 4, Section 4.4.2. However, for ease of reference, a brief overview is provided here. The second questionnaire, targeting the significant others of people with TBI
(see Appendix C), was mailed with the first questionnaire, which targeted adults with TBI
(see Appendix B), to the home addresses of 1,771 adults with moderate to severe TBI. This second questionnaire was addressed to a significant other of the person with the TBI. Adult participants with TBI were able to choose the significant other they wished to complete the second questionnaire. Alternatively, they were able to submit their own questionnaire without the second being completed if they wished.
One hundred and eighty four significant others returned the second questionnaire, a
10.4% response rate. However, as stated in Chapter 5, of the possible 1,771 questionnaires distributed, 256 were returned unopened. This means that 184 significant others responded out of a possible 1,515, a response rate of 12.1%.
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The questionnaire consisted of both closed- and open-ended questions and addressed the significant others’ roles in the lives of the people with TBI, their recollections of the acute care, inpatient and outpatient rehabilitation, transition between rehabilitation services, and community integration of the adults with TBI. The results pertaining to these topics and a breakdown of the demographic details of those who responded are detailed below.
6.3 Results
6.3.1 Demographics of Significant Others
As can be seen in Table 6.1, the majority of significant others in this study were a family member (55%), spouse (30%) or partner (10%) of the participant with TBI. Other relationships cited included friend (4%) and professional carer (2%). The high proportion of family members making up the significant other group in this study is not uncommon.
Other national and international studies investigating significant others’ or carers’ experiences post-TBI have large proportions of family members in their participant groups
(Ergh et al., 2002; Knight et al., 1998; Ponsford et al., 2003). For example, in Marsh’s
(1998) study, 68% of carers were family members and 29% were either a spouse or a partner. Likewise, 49% of Machamer’s (1998) participants were family members and 33% were spouses.
Many significant others in this study were aged 46 – 55 years (41%). However, large numbers of significant others also fell in the age ranges of 56 – 65 years (24%) and 36
– 45 years (19%), with a smaller number of participants falling into the other age groups.
The majority of significant others in this sample were female (79%).
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Table 6.1 Demographics of Significant Others (n = 184)
Demographics descriptors n %
Relationship to person with TBI Professional carer 3 1.6 Family member 101 54.9 Spouse 55 29.9 Partner 18 9.8 Friend 7 3.8 Other 0 0.0
Age < 18 years 2 1.0 19-25 years 1 0.5 26-35 years 16 8.7 36-45 years 35 19.0 46-55 years 75 40.8 56-65 years 44 23.9 66 years or older 11 6.0
Gender Male 38 20.7 Female 146 79.3
Martial status Married 120 65.2 Separated 13 7.1 De facto relationship 23 12.5 Single 27 14.7 Missing data 1 0.5
Employment Not employed 63 34.2 Employed less than 8 hrs 7 3.8 Employed between 9-16 hrs 10 5.4 Employed between 17-24 hrs 14 7.6 Employed between 25-32 hrs 19 10.3 Employed between 33-38 hrs 34 18.5 Employed more than 39 hrs per week 37 20.1
Cultural background Aboriginal or Torres Strait Islander 1 0.5 Caucasian 152 82.6 Italian 4 2.2 Greek 4 2.2 Chinese 3 1.6 Vietnamese 0 0.0 Otherα 13 7.1 Missing data 7 3.8
Highest educational certification received Primary school 4 2.2 Mandatory completion of high school 72 39.1 TAFE qualification 56 30.4 Undergraduate degree 20 10.9 Postgraduate degree 29 15.8 Missing data 3 1.6
α For breakdown of “other” data see Appendix K, Table 16.
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The high proportion of females within the significant other category in this study is not unique. For example, 82% of participants in the study by Knight et al. (1998) were female. Similarly, in studies by Marsh, Kersel, Havill and Sleigh (1998) and Murray,
Maslany and Jeffery (2006) of carer burden and the needs of family members of adults with
TBI, 86% of the participants were female.
The majority of significant others in the current study reported that they were married (65%). One hundred and twenty one of the 184 significant others who responded to this questionnaire reported being employed at the time of its completion. Of these significant others, hours employed per week were fairly evenly spread (see Table 6.1). As was expected, the majority of significant others who responded to the questionnaire reported being of Caucasian descent (83%). Only small minorities of participants reported being of Chinese (2%), Greek (2%), Italian (2%) or Aboriginal or Torres Strait Islander
(less than 1%) background. Comparison of the reported ethnicity of this group and the results of “ancestry by country of birth parents” in the 2006 Australian census showed that the proportion of ethnic minorities represented in this sample was representative of the country as a whole: According to the Commonwealth of Australia (2007), 3% of the
Australian population identify themselves as Chinese, 2% as Greek, 4% as Italian and 0.5% as Australian Aboriginal.
The highest level of education reported by a large majority of significant others was mandatory high school completion (39%), followed by TAFE qualification (30%). Smaller numbers of participants reported completing postgraduate (16%) or undergraduate degrees
(11%), with four participants reporting having completed only primary school. Comparison of these figures with the results of the 2006 Australian census indicates that the educational certification of this participant sample was representative of the numbers of people in the
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Victorian labour force with university qualifications: The Commonwealth of Australia
(2007) reported that in 2006, 21 to 25% of the Victorian population held a university qualification. However, the proportion of these Victorians holding postgraduate certification was at that time unknown.
6.3.1.1 Changes in Significant Others’ Status Following the TBI of Family Member or
Friend
The final section of the questionnaire significant others were asked to complete reflected on the changes that had occurred in their lives as a result of their family member’s or friend’s TBI (see Appendix C). These changes are reported in Table 6.2 and encompass the areas of age, marital status and employment.
As was expected, significant others reported being younger when their family member or friend sustained their TBI. The majority of significant others reported they were aged between 36 and 55 years (58%) at onset. Others reported that they were aged between
26 and 35 years (16%), 56 and 65 years (16%), 66 years or older (4%), or between 19 and
25 years (1%), with four significant others reporting they were less than 18 years of age.
Twenty-six significant others (14%) reported changes in their marital status since
TBI onset, including becoming separated (4%), beginning a new relationship (4%) or other
(5%). Other changes reported included four significant others getting married to the person with TBI, five significant others separating and then reconciling but still struggling, and one significant other divorced and now in a new relationship (see Appendix K, Table 17).
The number of reported changes of marital status in this study was significantly less than those reported by Wood and Yurkadul in 1997 (68% of their participants experienced relationship breakdown five years following the onset of TBI).
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Table 6.2 Changes in Significant Other Demographics (n = 184)
Changed demographic descriptors n %
Age at onset < 18 years 4 2.2 19-25 years 2 1.1 26-35 years 30 16.3 36-45 years 59 32.1 46-55 years 48 26.1 56-65 years 30 16.3 66 years or older 8 4.3 Not applicableα 3 1.6
Change in marital status No change 156 84.7 New relationship 7 3.8 Separated 8 4.4 Divorced 0 0.0 De facto relationship 0 0.0 Single 1 0.5 Otherβ 10 5.4 Missing data 2 1.1
Changed employment status No change 111 60.3 No longer employed 11 6.0 Got new job 23 12.5 Reduced hours 12 6.5 Work from home 5 2.7 Otherδ 12 6.5 Missing data 10 5.4
α If the significant other responding to this question in the questionnaire was a professional carer or a person unfamiliar with the healthcare journey of the adult with TBI prior to discharge into the community the responder was prompted to move directly to the final section of the questionnaire (see Appendix D). In that case, the responder did not answer this question. β For breakdown of “other” data see Appendix K, Table 17. δ For breakdown of “other” data see Appendix K, Table 18
Changes in employment status reported by significant others as a result of their family member’s or friend’s TBI included getting a new job (13%), reducing the hours worked at their current job (7%), no longer employed (6%) and working from home (3%).
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6.3.1.2 Summary
The majority of significant others in this study were female and were either a family member or a partner of the adult with TBI. Most were aged between 46 and 55 years, were married and were of Caucasian descent. Many were employed and had completed mandatory high school requirements or had TAFE qualifications. The characteristics of significant others in this group were similar to those of the participant groups of other studies investigating carer experiences (e.g., Ergh et al., 2002; Knight et al., 1998;
Machamer et al., 2002; Marsh et al., 1998; Ponsford et al., 2003).
Few significant others reported changes in their marital status as a result of their family member’s or friend’s TBI. A large majority, however, reported needing to change their employment. Common changes to significant others’ employment as a result of their family member’s or friend’s TBI included getting a new job, resigning from their employment, or reducing the hours they worked per week. According to Degeneffe (2001), role changes following a family member’s TBI are common and can at times require significant adjustment. When caring for a person with a moderate to severe TBI, parents may face extended parenthood, and spouses may face a change not only in their marital role but also in their responsibilities as a decision maker, and possible adjustment to single parent status (Degeneffe, 2001).
The following divisions of the results section of this chapter presents the experiences of participants as they pertain to each research question. These divisions include the reported continuum of care observed and experienced by significant others of participants with TBI, the impact of location on the continuum of care as recollected by significant others of participants with TBI, and other reported factors that influenced the continuum of care as recollected by the significant others of participants with TBI.
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6.3.2 What Is the Reported Continuum of Care Observed and Experienced by the
Significant Others of Adults with TBI?
The results addressing the first research question covered in this chapter are presented in eight sections: access to stages of continuum of care as observed by significant others, degree of satisfaction with continuum of care stages as observed by significant others, ability to visit the participant with TBI throughout their continuum of care, level of information provided as reported by significant others, level of supports available to significant others throughout their healthcare journey, involvement of significant others in helping guide care, transition planning, and significant others’ abilities to cope following community integration.
6.3.2.1 Access to Stages of Continuum of Care As Observed by Significant Others
According to Table 6.3, all significant others observed that their family member or friend with a TBI had access to appropriate acute care. As stated previously, this is not surprising, as participants were recruited from the client lists of acute trauma centres.
However, of those who responded to this study, only 113 significant others (61%) reported that their family member or friend with TBI accessed inpatient rehabilitation; 60 significant others (33%) reported their family member or friend had access to ongoing therapy following inpatient discharge. These reports by significant others are congruent with the recollections of the participants with TBI. As stated in Chapter 5, Section 5.3.2.1, 61% of participants with TBI reported accessing inpatient rehabilitation services, although only
25% stated they were accessing ongoing therapy at the time the survey was completed.
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In addition, of the 113 significant others in this study who observed their family member access inpatient rehabilitation, only 72% recollected that this service was provided by neurorehabilitative experts (see Table 6.4). This figure was slightly higher than the 66% of participants who reported that they had accessed specialist inpatient neurorehabilitation
(see Table 5.5).
Table 6.3 Significant Others’ Recollections of Access to Stages of Continuum of Care (n = 184)
Stages of continuum of care Response Yes No Missing data n % n % n %
Acute 184 100.0 0 0.0 0 0.0 Inpatient rehabilitation 113 61.4 69 37.5 2 1.1 Ongoing therapy reviews 60 32.6 109 59.2 15 8.2
Table 6.4 Significant Others’ Recollections of Access to Specialist Neuro-rehabilitation (n = 113)
Response n %
Accessed 81 71.7 Didn’t access 18 15.9 Don’t know 14 12.4
The other 28% of significant others reported that their family member or friend with
TBI attended inpatient rehabilitation, but either they perceived that this service was not specialist or were not certain whether it was. For example, one significant other reported that the family member was transferred to a rehabilitation hospital specialising in geriatric care, not neurorehabilitation.
He got sent to [the name of the rehab hospital]. It was foul! [The name of rehabilitation hospital] would mainly tend to elderly people with strokes and we had the worst experience there. (167b)
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6.3.1.2 Degree of Happiness with Continuum of Care Stages As Observed by Significant
Others
Regardless of the level of access to healthcare services, the majority of significant others were either extremely happy or very happy with the care provided in the acute setting and in inpatient rehabilitation (see Table 6.5). This level of happiness was noted to drop when significant others reflected on the services provided in an outpatient setting.
Table 6.5 Significant Others’ Degree of Happiness with Level of Care Provided
Satisfaction with level of care Acute Inpatient rehab Outpatient provided (n = 184) (n = 113) services (n = 184) n % n % n %
Extremely unhappy 13 7.1 8 7.1 11 6.1 Not happy 8 4.3 5 4.4 20 10.9 Okay 39 21.2 31 27.4 60 32.6 Very happy 72 39.1 40 35.4 54 29.3 Extremely happy 46 25.0 29 25.7 18 9.8 Missing data 6 3.3 0 0.0 21 11.4
Note: Although only 60 significant others reported that participants with TBI accessed formal outpatient rehabilitation, all significant others reported accessing some form of outpatient service (i.e., meeting with general practitioner). Therefore all significant others responded to this question.
Comparison of these data with the happiness of participants with TBI with the care provided (see Table 5.7) showed similar patterns of happiness with care received in the acute and inpatient settings. However, overall it seems that significant others were less happy with the services they received in outpatient settings (i.e., 18% fewer significant others than adults with TBI reported being extremely happy with outpatient services). It is thought that this is likely to have occurred as significant others reflected on their happiness with outpatient services (i.e., access to carer support, respite accommodation etc.) whereas participants with TBI reflected specifically on outpatient rehabilitation services (i.e., therapy provided as an outpatient through a community health centre).
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As stated in Chapter 5, Section 5.3.2.1.2, the varying degrees of happiness reported with residential (i.e., inpatient) versus non-residential (i.e., outpatient) rehabilitation services is not unique to this study. A Canadian study (LeFebvre et al., 2005) reported similar findings. According to the results of that study, the majority of adults with TBI and their families were content with services during the acute care and inpatient rehabilitation phases. However, their degree of contentment changed when they returned home. At this stage of the continuum, all adults with TBI and their families criticised the lack of resources. The points of view of physicians and health professionals were similar in that study. However, in addition, physicians and health professionals were critical of the lack of services available outside of metropolitan centres. According to these Canadian professionals, there was an urgent need to develop outpatient accommodation resources, social integration services, neuropsychiatric resources and medical staff with sufficient expertise in TBI (LeFebvre et al., 2005).
Reasons given for significant others’ degree of happiness in the present study are listed in Table 6.6. Patterns within the reasons given suggest that significant others’ degree of happiness was dependent upon their degree of satisfaction with the level of care provided, the perceived competence of staff, knowledge of and involvement in rehabilitation, perceived client improvement, presence of transitional planning and access to support (see Table 6.6).
Interestingly, one reason given by significant others for happiness with services which was not also given by participants with TBI was the need for empathy, both for the family members and for the participants with TBI. The need for empathy has been identified in research examining carer life satisfaction.
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Table 6.6 Reasons Given by Significant Others for Happiness with Services
Reasons and examples Acute Inpt. Outpt. Rehab Rehab
Degree of happiness with level of information provided 14 5 12 More information [is needed] on the condition and likely progress (11b).
Degree of happiness with general level of care provided 11 7 8 The care we received from all the staff at the [acute hospital] was amazing. They kept us well informed and were always available to answer our questions (29b).
Degree of happiness with changes in care during transition 10 1 0 through acute wards (i.e., movement from emergency ICU neurosurgery ward) [We were] not pleased when [patient was] taken from ICU [as she was] not [as] well supervised on ward (14b)
Degree of perceived communication between and within services 8 2 3 Staff should make sure they review [clients’] medical records in a timely manner, or else listen to the patient or relevant carer. We experienced miscommunication and resulting over-medication. This caused exceptional stress to my husband and over- medication of a blood pressure treatment (139b).
Degree of concerns regarding staff knowledge of TBI 6 5 6 Staff could have helped her with her recovery. The general opinion was you can walk and talk, get over it (141b).
Mention of impact of staff on recovery of person with TBI 5 4 0 A wonderful group of professionals who had my husband’s best interest their top priority (9b).
Greater need for empathy for both the family and person with 5 0 2 TBI My feeling was that the staff were more worried about him being quiet and doing as he was told, rather than actually caring about him as a human (75b).
Perceived shortage of services 4 8 10 There are limited allied health services in the country and it is often harder to get therapists to take on [compensable] clients. It took a long time to establish rehabilitation support (19b).
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Table 6.6 cont.
Reasons and examples Acute Inpt. Outpt. Rehab Rehab
Need to respect for the rights of adults with TBI and their 4 2 2 families Need to notify people about operations to take place and get consent. [Do] not assume it has already been given (187b).
Improvements needed in infrastructure 3 6 2 The hospital was being renovated and there was no available room for patients in recovery (71b)
Need for more transparent and organised transition planning 2 3 4 between continuum of care stages [We were] given half an hour notice of her discharge. We had been told earlier she could go to a rehab centre, and then told we had to look after her. We didn’t even have a bed for her except mine (40b).
Happiness with degree of monitoring and follow-up post 4 0 19 discharge from residential services [There] should have been more follow-up. Maybe at 6 months then 12 months (57b).
Impact of location on service provision and ability to access 2 3 4 services [We needed to] visit the [metropolitan acute hospital] every 6 months for 5 years. It was very expensive to pay for fuel, plus it was a long way to travel. A whole day was required, 7am to 7pm (66b).
Demand placed upon carers 2 0 0 We were glad to have him home but it was a struggle looking after him for the first 18 months (52b).
Level of anxiety related to uncertainty in client outcome 1 1 0 [We are still] uncertain about the severity of the damage and possible long-term issues (13b)
Degree to which the needs of significant others were met 1 5 12 It would have been good to have someone to talk to about everything. You felt a bit alone. [You do] not know what to expect from one day to next (70b)
Improved and more transparent funding arrangements 0 1 9 I was anxious after I came home from hospital because the [compensable fund] were not helpful in any way. [They were] dragging things out and not paying bills.
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According to Wells, Dywan and Dumas (2005), one of the most detrimental behaviours to carer’s quality of life is lack of empathy, on the part of both service providers and the adult with TBI. Wells et al. (2005) found that a TBI survivor’s inability to express appreciation of carer’s assistance is detrimental to carer outcomes. Dealing with this issue, through carer counselling, is said to be central to rehabilitation.
6.3.2.3 Ability of Significant Others to Visit Their Person with TBI Throughout the
Continuum of Care.
The majority of significant others reported that they were able to visit their family member or friend with TBI in both the acute and inpatient rehabilitation settings (92% and
100% respectively; see Table 6.7). The length and frequency of these visits appeared to be greater in the acute setting (see Table 6.8), where participants were less medically stable and their prognosis was more uncertain than in inpatient rehabilitation.
Predominantly, significant others (51%) reported that in acute settings visits tended to span as long as they liked, whereas in inpatient rehabilitation, significant others reported that they primarily made occasional short visits (48%). The second most common type of visit reported by significant others, daily visits, was the same in both acute and inpatient rehabilitation settings (39% and 38% respectively, see Table 6.8).
Table 6.7 Significant Others’ Ability to Visit Participant with TBI Throughout Their Healthcare Journey
Stages of Continuum of Care Responses Yes No Missing data n % n % n %
Acute (n = 184) 169 91.8 10 5.4 5 2.7 Inpatient rehabilitation (n = 113) 113 100.0 0 0.0 0 0.0
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Table 6.8 Significant Others’ Length of Visits with Participant with TBI in Acute and Inpatient Rehabilitation Settings
Length and frequency Acute (n = 169) Inpatient rehabilitation (n = 113) n % n %
One short visit 3 1.8 7 6.2 Occasional short visits 11 6.5 54 47.8 Daily visits 65 38.5 43 38.1 As long as we liked 86 50.9 5 4.4 Other α 3 1.8 3 2.7 Missing data 1 0.6 1 0.8
α For breakdown of “other” data see Appendix K, Table 19.
6.3.2.4 Satisfaction with Level of Information Provided
One hundred and forty two (77%) significant others reported that they were given adequate information about their family member’s or friend’s injuries and expected prognosis in the acute care stage. Likewise, three quarters of significant others also reported receiving adequate information in inpatient settings. This means that around one quarter of significant others of participants with TBI reported that they received inadequate information about their family member’s or friend’s injury, prognosis and services available in at least one stage of their continuum of care (see Table 6.9).
Table 6.9 Significant Others’ Recall of Adequacy of Information
Response Acute Progress in inpatient Inpatient (n = 184) rehabilitation rehabilitation (n = 113) (n = 113) n % n % n % Yes 142 77.2 82 72.6 84 74.3 No 37 20.1 31 27.4 29 25.7 Missing data 5 2.7 0 0.0 0 0.0
Note. The column “progress in inpatient rehabilitation” reflects significant others’ perceptions regarding the adequacy of information they received on their family member’s or friend’s improvement, whereas the column pertaining to inpatient rehabilitation relates to significant others’ happiness with their understanding of what inpatient rehabilitation was and the services available.
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The perception of a lack of information provided throughout the continuum is one of the most frequently cited problems in studies reflecting the experiences of significant others (Fyffe, 1996; LeFebvre et al., 2005; Murray, Maslany, & Jeffery, 2006; Sample &
Darragh, 1998). According to Lefebvre et al. (2005), communication and sharing of information by family members, adults with TBI, physicians and health professionals is needed in each stage of the care process. However, health professionals and physicians report that, although it is important to provide family members with information, they are justified in the vague nature of that provision, given “uncertainty about the clinical evolution of the casualty, as well as worries about upsetting the family unnecessarily and, conversely, not giving false hope” about recovery (LeFebvre et al., 2005, p. 589). This perception by health professionals and physicians is incongruent with the Victorian Charter of Patient Rights (Department of Human Services, 1995), which stipulates that patients have the right to information about their healthcare, information about which hospital staff member provides their care, and access to their health record if requested.
In their study of carer experience, Knight et al. (1998) reported that nearly all 52 participants expressed concerns about how difficult it could be to obtain information regarding appropriate resources for adults with TBI and about the long term consequences of TBI. In that study, one carer commented that the assistance she most needed was “to be told what to expect and where to go for help” ( p. 478). The authors also reported that the difficulties associated with obtaining information regarding TBI was exacerbated for families in small towns and rural communities.
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6.3.2.5 Satisfaction with Level of Supports Available to Significant Others Throughout
Their Healthcare Journey
The majority of significant others (74%) in this study reported that they did not receive or thought they were ineligible to receive any form of carer’s allowance (see Table
6.10). Of the 25 participants who reported receiving a carers’ allowance, 23 reported that it was provided by Centrelink, with the other two stating that the Transport Accident
Commission paid their allowance.
Other types of support provided to significant others who are supporting their family member or friend throughout their continuum of care are travel or accommodation support. According to the results of this study, the majority of significant others did not receive accommodation or travel support in the acute stage (78% and 82% respectively, see
Table 6.11).
Table 6.10 Significant Others’ Access to Carer’s Allowance
Supports n %
Access (n = 184) Accessed 25 13.6 Didn’t access 136 73.9 Don’t know 18 9.8 Missing data 2 1.1 Not applicable α 3 1.6
Organisation that provided funding (n = 25) Centrelink 23 92.0 Transport Accident Commission 2 8.0 WorkCover 0 0.0 Motor Accident Authority 0 0.0 Other 0 0.0
α If the significant other responding to this question was a professional carer or a person unfamiliar with the healthcare journey of the participant with TBI prior to discharge into the community, they were prompted to move directly to the final section of the questionnaire. In that case, they did not answer this question. Their missing response was coded as not applicable.
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This is not surprising, given Honey and McCubbery’s (1998) assertion that there is a lack of available upfront dollars to enable carers to travel when a family member is in a metropolitan centre, especially during the acute care stage. However, of those who did receive support, accommodation support was provided by family and friends (41%),
Transport Accident Commission funds (31%), hospital accommodation (10%) and
WorkCover funds (3%). Travel support was provided by the Transport Accident
Commission (60%), family and friends (24%), subsidised public transport (8%) and
WorkCover funds (4%) (see Table 6.11).
Table 6.11 Significant Others’ Access to Accommodation and Travel Support During the Acute Phase
Supports Accommodation Travel
n % n %
Access to support (n = 184) Accessed 29 15.8 25 13.6 Didn’t access 144 78.3 150 81.5 Missing data 7 3.8 5 2.7 Not applicable 4 2.2 4 2.2
Source of support Family and friends to stay with/get lift 12 41.4 6 24.0 Hospital accommodation 3 10.3 0 0.0 Subsidised public transport 0 0.0 2 8.0 My family/friends insurance fund paid for 0 0.0 0 0.0 it TAC organised it 9 31.0 15 60.0 Work cover organised it 1 3.4 1 4.0 Other β 4 13.8 1 4.0
β For breakdown of “other” data see Appendix K, Table 20 and 21.
The low levels of accommodation and travel support provided in the acute stage were mirrored during inpatient rehabilitation. As seen in Table 6.12, only 12% of significant others received accommodation support and only 13% received travel support.
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A further 23% reported they would have found accommodation support helpful and 41% stated they would have found travel support beneficial (see Table 6.12).
Table 6.12 Significant Others’ Access to Accommodation and Travel Support During Participant’s Inpatient Rehabilitation Stay (n = 113)
Response Accommodation Travel n % n %
Accessed support 13 11.5 15 13.3 Didn’t access support, but I would have liked it 26 23.0 46 40.7 Didn’t access support, I did not need it 74 65.5 52 46.0
The final source of support examined in this study was significant others’ access to carer support services on client discharge. Only 19% of the significant others who responded to this questionnaire reported having access to such a service (see Table 6.13).
However, 35% reported that they were not the family member’s or friend’s primary carer on their discharge and therefore were ineligible for this service.
Table 6.13 Significant Other’s Access to Carer Support Services (n = 184)
Support services n %
Accessed 34 18.5 Did not access 71 38.6 I am not a carer 64 34.8 Missing data 15 8.2
The need for financial, emotional and family support throughout the continuum of care of a person with TBI is frequently discussed in the literature (e.g., Fyffe, 1996;
Koskinen, 1998; LeFebvre et al., 2005; Murray et al., 2006; Sample & Darragh, 1998).
Studies indicate that carers and adults with TBI undergo extreme stress following their head
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injury, for which they need to be supported. Research also shows that stress extends well beyond recovery from physical injury (Fyffe, 1996).
The provision of social support has been shown to be a moderator of carer stress
(Ergh et al., 2002). In their study of the predictors of carer and family functioning following
TBI, Ergh et al. found that social support showed a direct and linear relationship to family functioning. In the absence of adequate support, carer stress was noted to increase alongside time post-injury, cognitive dysfunction and lack of insight of deficits in the person with TBI, whereas these characteristics were not associated with distress among carers with perceived adequate support.
According to clinical care guidelines, the provision of early and ongoing support for families of adults with TBI is essential in helping prepare them for the effects of the TBI.
Support may also reduce the psychological sequelae experienced by the family and result in better long-term outcomes for both the person with TBI and the family (New Zealand
Guidelines Group, 2006). Given these findings it is concerning that fewer than 20% of significant others in this study reported accessing any form of formal support (e.g., carer’s allowance, accommodation or travel support or carer support services) during their family member’s or friend’s healthcare journey. The reasons for this limited access are unknown.
However, this area merits further attention given the far-reaching implications of poor support for both adults with TBI and their significant others.
6.3.2.6 Involvement of Significant Others in Helping Guide Care
The majority (52%) of significant others in this study reported being invited to therapy (regardless of whether they accepted or not), having attended therapy (60%), having attended regular progress meetings (80%) and having been involved as an active
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team member in rehabilitation (58%) (see Table 6.14). However, consistent with the patterns reported in Chapter 5, few significant others (41%) reported being involved in setting goals. This is concerning, since the aim of rehabilitation is to reach the goals of a person with TBI and their family (British Society of Rehabilitation Medicine & Royal
College of Physicians, 2003). If adults with TBI and/or their significant others are not involved in setting goals, one wonders whose goals the rehabilitation aims to achieve.
Table 6.14 Significant Others’ Involvement in Guiding Care in Inpatient Rehabilitation (n = 113)
Response Invitation to Attendances Attendance Involvement Feel like an attend in therapy at regular in setting active team therapy sessions progress goals member sessions meetings n % n % n % n % n %
Was 59 52.2 68 60.2 90 79.6 46 40.7 67 58.4 involved Wasn’t 54 47.8 45 39.8 23 20.4 67 59.3 46 40.7 involved
6.3.2.7 Transition Planning
Another important aspect of TBI rehabilitation is transitional planning. Transitional planning involves consciously thinking about and planning clients’ transitions from acute to inpatient rehabilitation, then to community-based rehabilitation and finally to ongoing monitoring. Movement through these stages can be both exciting and frightening for clients and their families, as the level and intensity of services are reduced and client independence re-established. Tables 6.15 to 6.18 reflect the data collected from significant others on transition planning in this stage.
Table 6.15 contains data on the issues related to client discharge from inpatient rehabilitation, including significant others’ recollections of being informed of the discharge date and the perceived appropriateness of discharge timing of their family member or friend
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with TBI. Seventy eight percent of significant others reported that they were informed of their family member’s or friend’s discharge the day prior to it occurring. These data were similar to the reports of participants with TBI: as seen in Chapter 5, 82% of participants reported having been forewarned of their discharge date.
Table 6.15 Significant Others’ Experiences of Participant’s Discharge Timing (n = 184)
Experience of discharge timing n %
Informed regarding discharge date Informed 144 78.3 Not informed 19 10.3 Missing data 21 11.4
Perceived appropriateness of discharge timing Appropriate timing 121 65.8 Not appropriate, it was too early 32 17.4 Not appropriate, it could have been earlier 9 4.9 Missing data 22 12.0
Furthermore, 66% of significant others perceived that the discharge date set for the person with TBI was appropriate. However, 17% of significant others perceived that the discharge date was too early and 5% perceived it was too late. The perceptions of the significant others in this study once again closely aligned with those of the participants as reported in Chapter 5: 73% of participants considering that their set discharge date was appropriate, 20% feeling that they were discharged too early and 5% that they stayed too long.
Table 6.16 contains data relating to significant others’ perception of their ability to care for their family member or friend on discharge. Of the 113 significant others who reported that their family member or friend attended inpatient rehabilitation, 62% reported that they received carer training. On discharge, 53% of significant others were given a care plan. The other 47% of significant others reported they did not receive a care plan or had
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never heard of them. Of the 60 significant others who received a care plan, 87% found it helpful in instructing them how to care for their family member or friend on discharge. The limited amount of carer training reported by significant others is of concern, because much of the responsibility for supporting a person with TBI during the years that follow residential rehabilitation lies with informal carers, most usually the person’s spouse or partner (Knight et al., 1998).
Table 6.16 Significant Others’ Training to Care for Participant with TBI upon Discharge from Rehabilitation (n = 113)
Trained to care n %
Trained to care for client on discharge Yes 70 61.9 No 31 27.4 I wasn’t the carers were 12 10.6
Given care plan on discharge Given care plan 60 53.0 Not given care plan 14 12.3 Didn’t get one, I’ve never heard of care plans 39 34.5
Perceived helpfulness of care plan (n = 60) Yes 52 86.7 No 6 10.0 Missing data 2 3.3
Table 6.17 contains data reflecting the support significant others received on client discharge. Of those who responded to these questions, 50% felt they were supported upon client discharge. One hundred and twenty one significant others (66%) reported that they were provided with the inpatient hospital’s contact details and 109 (59%) reported that they were informed of the discharge services to be provided to both themselves and their family member or friend to ensure continued rehabilitation gains and a smooth transition.
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Table 6.17 Significant Others’ Support on Participant’s Discharge (n = 184)
Response Support on Hospital contact Informed of discharge details discharge services n % n % n %
Accessed 91 49.5 121 65.8 109 59.2 Did not access 65 35.3 42 22.8 54 29.3 Missing data 28 15.2 21 11.4 21 11.4
Until this point, both participant groups (i.e., significant others and adults with TBI) reported similar experiences of services accessed following TBI. However, significant recall variation between the groups was noted when comparison was made between the recollections of participants with TBI and their significant others with regard to the provision of contact details. In this study, 79% of the participants with TBI (see Table 5.23) reported being provided with these details compared to 66% of significant others. This incongruence in the data (i.e., 13% more adults with TBI reporting being given hospital contact details) might be due to the high percentage of missing responses (11%) in the significant others’ data for this question (see Table 6.17).
According to clinical care guidelines the transition of adults with TBI through the stages of rehabilitation “should be smoothed by effective communication and sharing of information between services so that adults with TBI progress in a seamless continuum of care through the different stages” (New Zealand Guidelines Group, 2006). Ways to facilitate effective communication and a smooth transition of adults with TBI and their significant others through the continuum of care stages is to ensure that the significant others are informed of the client’s discharge date prior to it occurring, trained in how to care for their family member or friend upon discharge, provided with contact details of the discharging hospital and given information about the upcoming services to be provided
(British Society of Rehabilitation Medicine & Royal College of Physicians, 2003; New
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Zealand Guidelines Group, 2006). The experiences reported by significant others suggests that this occurred just over 50% of the time.
The final table in this section, Table 6.18, reflects significant others’ feelings of anxiety on client discharge. Over 70% of significant others in this study reported feeling anxious on client discharge. Reasons for this anxiety included uncertainty about what life would be like once at home, the degree of caring demands placed on the family once at home, uncertainty about the client’s prognosis and the ability of the family to cope, as well as the family feeling ill informed and ill equipped to deal with the “new person”. Other sources of uncertainty cited are listed in Table 6.19.
Table 6.18 Significant Others’ Feelings of Anxiety on Participant’s Discharge (n = 184)
Responses n %
Felt anxious 130 70.7 Did not feel anxious 34 18.5 Missing data 20 10.9
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Table 6.19 : Reasons for Significant Others’ Level of Anxiety on Discharge
Reasons for anxiety8, and examples No. of references made
Anxiety related to uncertainty for the future 45 [We were] uncertain about the severity of the damage and possible long-term issues (13b).
Demands on carers to provide care for client 24 We felt that our daughter’s rehabilitation was left in our hands. We had to rely on our own judgement (53b).
Changed person due to TBI sequelae 12 How do I deal with brain injury? His mood changed, his personality changed, he got more aggressive (87b).
Need for greater information 10 I was constantly discovering the side effects of the accident and was not properly prepared to deal with them. It was difficult to speak to doctors over the phone as some didn’t speak very good English (130b).
Uncertainty regarding appropriateness of discharge timing 10 [Person with TBI] needed to stay in rehab longer than he wanted but was obsessed with getting home (65b).
Need for support on client discharge 7 He was discharged with no real advice, other than the bleeding obvious as he was in a body brace. He was very afraid and in lots of pain. That was very hard for me to deal with alone (75b).
Client outcome related concerns 6 We were very concerned about her rehab going backwards [once she was returned home] (202b).
8 The top 7 reasons causing anxiety and strategies for its dissipation are listed here. Further reasons and strategies were suggested; those referred to less frequently are listed in Appendix K, Table 23.
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Table 6.19 cont.
Ways anxiety can be relieved, and examples Increased support for carers 18 Much more support was needed but not given (10b).
More information needed 16 Written information about head trauma [is needed]. There was a poster in the hospital which had a diagram showing the arachnoid membrane. [This] helped [us] understand “subarachnoid haemorrhage”. [It] would have been useful to have access to this practical information (13b).
Relieve anxiety related to uncertainty for the future 4 [The future] was unknown. That was the most difficult to handle emotionally (209b)
Relieve staff shortages to ensure adults with TBI get services they need 4 Nothing can prepare you [for] when a family member has a severe brain injury. But departments in charge of putting things in place should follow through, regardless of staff leaving, sickness etc., so the person with the ABI is not lost in a system (207b).
Improved transition planning between continuum of care stages 4 Perhaps short stays at home prior to discharge [would help] but in our case this was not possible (12b).
Education regarding changed person due to TBI sequelae and possible implications of this 3 [Staff] needed to inform us of how to handle [people with TBI]. Keeping calm as they don’t process as quickly as we do. Managing it was hard (87b).
Lessen demands on carers 3 Much more support was needed and not given (10b).
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Significant others thought that this anxiety could be relieved through greater access to support services, the provision of more information, increased staffing in order to provide services needed by clients with TBI, improved transition planning, improved monitoring following discharge from hospital-based rehabilitation services and decreased demands on carers following client discharge (see Table 6.19).
Consideration of ways to relieve the anxiety of significant others on discharge is important, as anxiety does not necessarily diminish with time. According to Livingston and colleagues (Livingston, 1987; Livingston et al., 1985a, 1985b), serial assessment of a group of female relatives of 57 patients with severe TBI at 3, 6 and 12 months post-injury showed that anxiety did not reduce with time. In fact, those with high levels of anxiety did not experience reduced anxiety over a year following client discharge from residential services.
Moderators of carer anxiety, stress and burden were discussed earlier (see Chapter 2,
Section 2.3.4). Moderators of carer anxiety identified in previous research include positive carer appraisal (Harris et al., 2001), changes in coping styles (Wells et al., 2005), perception of degree of carer mastery (Hanks et al., 2007), and ability to access external support (Ergh et al., 2002).
These moderators closely align with the anxiety relief strategies identified by the significant others in this study, including increasing access to support services. The need for information, greater access to health services and reduced demands on carers were also identified in Sinnakaruppan and Williams’ (2001) critical appraisal of the literature relating to the needs of family members of head injured relatives. According to their review, carers most frequently requested the need for general information regarding the nature of TBI, its effects and techniques for adjusting to the impairments sustained by the person with TBI; for health professionals to answer questions with honesty; a plan for the future care for the
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adult with TBI; time to themselves outside the home and the care role; and hope for improvement in the future.
6.3.2.8 Significant Others’ Reported Levels of Coping in the Community.
As stated above, a number of strategies can be implemented to help relieve carer anxiety during the transition from inpatient rehabilitation to home. These strategies, when implemented, have been shown to help significant others adapt to and cope with the impact of their family member’s or friend’s TBI on their life (Ergh et al., 2002; Hanks et al., 2007;
Harris et al., 2001; Wells et al., 2005). The ability of significant others to cope with their new situation following the family member’s or friend’s TBI is essential, given their potential to support the person with TBI in the years that follow residential rehabilitation.
Moreover, positive coping strategies used by families to accommodate the TBI of a family member have been shown to be strongly predictive of significant others’ overall adjustment
(Knight et al., 1998).
According to Weiten (1998), coping in this context refers to a significant other’s active efforts to master, reduce or tolerate demands created by stress (i.e., ability to cope with the onset and sequelae of their family member’s or friend’s TBI). Clinical care guidelines and international researchers stipulate that significant others must be supported in their caring role (British Society of Rehabilitation Medicine & Royal College of
Physicians, 2003; New Zealand Guidelines Group, 2006). One of the ways of doing this is by ensuring the provision of respite care.
Once adults with TBI were discharged home, significant others in this study experienced varying levels of ability to access respite care when needed (see Table 6.20).
Only 15% of the significant others in this study reported receiving respite care. However, it
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should be noted that 56% felt they did not need to access respite care. Of those who did access respite care, 64% reported having experienced no need to wait. The majority (46%) of respite services were also provided within the home.
Table 6.20 Significant Others’ Perceived Ability to Access Respite Care for Participant with TBI (n = 184)
Response n %
Access to respite care (n = 184) Accessed 28 15.2 Did not have access 19 10.3 Did not need respite care 104 56.5 Don’t know whether had access to respite 26 14.1 Missing data 7 3.8
Reported existence of respite waiting list (n = 28) Waiting list existed 6 21.4 No waiting list 18 64.3 Missing data 4 14.3
Site of respite provision (n = 28) They came into our home 13 46.4 At a hostel 3 10.7 Other α 5 17.9 I don’t know 7 25.0
α For breakdown of “other” data see Appendix K, Table 22.
The low levels of access to respite care reported by significant others in this study is concerning, given that the second greatest cause of anxiety of significant others was the demand on them to provide care for the person with TBI (see Table 6.19). According to
Marsh et al. (1998), the provision of respite care services may be one of the most economically viable ways of maintaining the family’s ability to continue providing care for adults with TBI. The reasons why so few significant others accessed respite care is currently unknown. It is unknown whether limited access reflects limited need, poor awareness or knowledge of the service, or limited services provided. The reasons why respite care is accessed by few significant others in Australia requires further investigation.
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6.3.2.9 Summary
All significant others in this study reported access to acute care for their family member or friend with TBI, whereas only 61% of significant others reported access to inpatient rehabilitation and 33% to ongoing community-based therapy. Of those who did access rehabilitation, the majority of significant others reported that they were either very happy or extremely happy with the care provided. However, between 11% and 17% of significant others reported being not happy or extremely unhappy with acute care, inpatient rehabilitation or outpatient rehabilitation.
Over 90% of significant others in this study reported that they were able to visit their family member or friend with TBI in both acute and inpatient rehabilitation settings.
The frequency and length of visits was noticed to reduce as the person with TBI moved from acute care to inpatient rehabilitation.
Overall, the majority of significant others in this study reported poor access to support services. This is an important finding, as support services were identified by significant others as a solution for reducing their anxiety once their family member or friend was discharged into their care. Only 25 (14%) of significant others in this study reported receiving a carer’s allowance. Similarly, only 29 (16%) and 25 (14%) participants reported accessing accommodation services and travel support, respectively, while their family member or friend was in the acute stage of their care. These figures dropped to 13
(12%) and 15 (13%) significant others accessing accommodation and travel support during inpatient rehabilitation. Finally, only 19% of significant others reported being able to access carer support services on client discharge.
The data from this study also suggest that significant others provided only limited input into guiding the rehabilitative journeys of their family member or friend with TBI,
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despite clinical care guidelines stating that they should be involved (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
Group, 2006). Fewer than 60% of significant others reported being invited to and attending therapy, attending progress meetings, being involved in setting goals or feeling like an active team member.
The majority of significant others reported that they were informed of appropriately timed service discharge dates. However, 25% felt that the timing of discharge was either too early or too late and 10% reported they were not informed of their family member’s or friend’s discharge.
Additional problems identified by significant others in this study included not being trained and supported in client care on discharge, not being given a discharge care plan, nor provided with hospital contact details and a list of follow-up discharge services.
Given these findings, it is not surprising that 70% of significant others reported being anxious on their family member’s or friend’s discharge.
6.3.3 What Is the Impact of Location on the Continuum of Care Observed by Significant
Others’ of Adults with TBI?
The second research question related to the significant others’ perceptions of the impact of location on the healthcare journey of their family member or friend. Data presented in this section were extracted from the second questionnaire, completed by the significant others of participants with TBI. The results relating to the impact of location on services provided are discussed in three sections: Accessibility and Remoteness Index of
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Australia (ARIA) classifications, the need to move as a result of TBI, and the need to travel to visit a family member or friend during their continuum of care.
6.3.3.1 ARIA Classifications
Significant others reported on the impact of location on the rehabilitation services received in a number of ways. Initially, they documented the location of the town in which they lived before their family member’s or friend’s TBI; they then documented the location of the town in which they lived following the head injury; this was followed by listing the location of the town in which the family member or friend received acute and rehabilitation care. These locations were then categorised into ARIA classifications (Commonwealth
Department of Health and Aged Care, 2001), the results of which are listed in Table 6.21.
As can be seen in this table, 86% of significant others who took part in this study reported living in highly accessible localities prior to their family member’s or friend’s
TBI. Of these significant others, 10 reported moving as a result of their family member’s or friend’s head injury. Of the 10 who moved, seven remained in a highly accessible area and three moved to an accessible area. The three who moved to an accessible area moved to an area considered more remote according to ARIA (Australian Bureau of Statistics, 2001)
Only 8% of significant others reported living in an accessible area before their family member or friend sustained a TBI, with only 1% reporting that they resided in a moderately accessibly area. This range of classifications was not reflected in significant others’ reports of acute and inpatient care locations, with 100% of all reported service provider localities being classified as highly accessible. This indicates that all significant others in this study were required to travel to highly accessible regions to visit their family member or friend in the acute and residential rehabilitation stages of their continuum of care.
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Table 6.21 Degree of Remoteness of TBI Services Accessed as Reported by Significant Others
Degree of remoteness Town pre-onset Town moved to Town Location of Acute Town Location of Inpatient (n = 184) (n = 16) Care Rehabilitation (n = 184) (n = 113) n % n % n % n %
Highly accessible 158 85.8 12 75.0 168 91.3 113 100.0
Accessible 15 8.2 3 18.8 0 0.0 0 0.0
Moderately accessible 1 0.5 1 6.3 0 0.0 0 0.0
Remote 0 0.0 0 0.0 0 0.0 0 0.0
Overseas 1 0.5 0 0.0 0 0.0 0 0.0
Can’t categorise 9 4.9 0 0.0 16 8.7 0 0.0
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6.3.3.2 The Need to Move as a Result of TBI
The impact of location on access to services can be felt in a number of ways. Given the length of recovery time required following a moderate to severe TBI, significant others may need to spend substantial periods of time in metropolitan areas or large regional centres where services are based (Newberry, 2001). They may also need to travel long distances to access services with limited transport options (Honey & McCubbery, 1991;
MacPhail, 1998) and may need to temporarily relocate in order to support the rehabilitation of their family member or friend.
As shown in Table 6.22, 15 (8%) significant others reported needing to move following their family member’s or friend’s TBI. Ten of these resided in highly accessible areas before onset. The reason significant others gave for needing to move included to become a primary carer, to be closer to rehabilitation services or to move to a house more suitable for a person with TBI (see Table 6.22).
Table 6.22 Significant Others’ Need to Move as a Result of Participant’s TBI (n = 184)
Responses n %
Needed to move 15 8.2 Did not need to move 164 89.1 Missing data 5 2.7
Reason why moved (n = 15) To become primary carer 3 20.0 To be closer to rehabilitation service 3 20.0 To be in a house more suitable for a person with TBI 2 13.3 Other α 5 33.3 Missing data 2 13.3
α For a breakdown of “other” data see Appendix K, Table 24.
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6.3.3.3 Need to Travel to Visit Family Member or Friend with TBI Throughout Their
Continuum of Care
To visit their family member or friend with TBI, 84% and 92% of significant others reported needing to travel from their home locality to acute and rehabilitation settings, respectively. The distances travelled are listed in Table 6.23.
Table 6.23 Significant Others’ Travel to Visit Participant with TBI
Responses Acute Inpatient (n = 184) rehabilitation (n = 113) n n % %
Need to travel Yes 155 84.2 104 92.0 No 25 13.6 9 8.0 Missing data 4 2.2 0
Distance travelled to visit adults with TBI <= 10km 13 8.4 17 16.3 11-20km 18 11.6 17 16.3 21-40km 22 14.2 20 19.2 41-100km 42 27.1 21 20.2 101-200km 23 12.5 13 12.5 201-500km 24 15.5 7 6.7 > 500km 6 3.9 4 3.8 Can’t categorise 7 4.5 5 4.8
As can be seen, the majority of significant others in this study reported needing to travel 21 – 40km, 41 – 100km or 101 – 200km to visit in acute settings, whereas reported distances travelled to inpatient rehabilitation were more evenly spread across all but the highest distance categories (see Table 6.23). The furthest distances significant others reported travelling were 1650 and 1800km to visit their family member or friend in the acute stage.
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Of those who needed to travel to visit a family member or friend in an acute hospital, approximately 24% reported that they needed to move to the town or city in which the hospital was located for at least a few days and up to the entire length of the family member’s or friend’s acute stay (see Table 6.24). This could be longer than a week. This is of concern, given the findings reported earlier that very few significant others knew about and/or accessed accommodation or travel support. The financial and social ramifications for significant others of this displacement are unknown.
Table 6.24 Significant Others’ Length of Time of Relocation in Acute Stage (n = 184)
Responses n %
The length of the acute visit and then I would drive home 92 50.0 A few days 7 3.8 A week 3 1.6 More than a week 10 5.4 The entire time my family member was admitted in the acute 25 13.6 hospital Other α 39 21.2 Missing data 6 3.3 Not applicable 2 1.1
α For breakdown of “other” data see Appendix K, Table 25
MacPhail (1998) and Stringer (1999) acknowledged the problems resulting from the isolation of adults with TBI from their social networks during the acute and residential rehabilitation stages of their care. When reflecting on the individual with TBI, they reported that once family and friends are positioned “outside” the person and what is happening
(e.g., the person with TBI relocates to a highly accessible area for acute and rehabilitation care, while family and friends remain in the home town), it is very hard to reconnect. They advised that any rehabilitation service should place an emphasis on the involvement of
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family and friends. However, the impact of the social isolation of significant others who relocate to highly accessible areas to care for their family member or friend following TBI is unknown.
The importance of support as a moderator of carer stress, anxiety and burden has been noted (Ergh et al., 2002). The importance of maintaining a support system while needing to relocate to be close to the family member or friend with TBI is also acknowledged (MacPhail, 1998), as is the importance of friendship. Friendships formed both by adults with TBI and their significant others have been shown to dwindle following
TBI. Macphail (1998) recommended that attention be paid to friendships during the acute and residential rehabilitation stages of a person’s care, as most friendships established before the injury do not continue after.
6.3.3.4 Summary
The majority of significant others reported that they came from highly accessible localities. This is not surprising, since most of Victoria is considered to be highly accessible. Moreover, the provision of TBI services in highly accessible localities is predictable, given that according to the ABS (2001) the majority of specialty hospitals are located in larger centres with the greatest population base. However, it is alarming how many significant others reported that they needed to travel 100km or over to visit a family member or friend in hospital, given their reports of residing in a highly accessible area.
Clearly, even highly accessible areas may not be within an easy distance of an inpatient rehabilitation service.
The high number of locations classified as highly accessible in Victoria, seeming indiscriminate of the need to travel for services, aligns with a weakness of ARIA already
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mentioned (see Chapter 5, Section 5.3.3). The main weakness in using ARIA as an index of accessibility and remoteness is that two dissimilar areas may be given the same remoteness score even though the likely accessibility to goods and services is very different. The second main disadvantage is that, according to the ARIA classification, 81% of Australians live in the most accessible locations (i.e., highly accessible). Given this level of accessibility, 81% of Australians should not have difficulty accessing the health services they need; that is, unless the services are not available in those areas, or unless Australians are discriminated against on the basis of social location (i.e., funding allocation). These issues have been discussed from the perspectives of both adults with TBI, in Chapter 5, and their significant others, in the previous sections of this chapter. The final section of the results presented in this chapter relates to other factors, aside from funding and location, which may impact upon the abilities of adults with TBI and their significant others to access services.
6.3.4 What Other Reported Factors Influence the Continuum of Care Recollected by the
Significant Others of Adults with TBI?
The third research question addressed in this chapter seeks to identify factors aside from location which may impact upon the continuum of care as recollected by the significant others of adults with TBI. Presented in this section are factors which were frequently cited by significant others of adults with TBI in responses to open-ended questions. These data were analysed using content analysis, as described in Chapter 4,
Section 4.7.1.
Table 6.25 lists factors frequently identified by significant others as influencing the continuum of care experienced by their family member or friend with TBI. The most
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Table 6.25 Factors Identified by Significant Others As Influencing the Continuum of Care Received by Adults with TBI
Factors and examples No. of participants reporting factors
Satisfaction with quality of care provided 87 The ABI unit was extremely focused on providing the best care and support for our son (5b).
Need for more information (i.e., TBI condition, likely prognosis, services 64 available etc) There was a lack of information given to us about the condition. To be given any information I had to ask questions. Being sat down and given information on side effects, the condition itself and why it happened would have been appreciated (70b).
Impact of staff on outcome (i.e., ability to motivate participants, assistance 64 with setting attainable goals) A wonderful group of professionals, who had my husband’s best interest as their first priority (9b)
Anxiety related to uncertainty in care provision and likely family 50 member/friend’s recovery My son was “different”. I was concerned that he may have a fit. I didn’t know how much to let him do (100b).
Need for follow-up and monitoring after discharge from hospital-based 44 services I don’t think there was enough follow-up. One specific concern my husband had was never addressed. When he asked about it he got no response. He gave up pursuing it and now just lives with it (184b).
Needs of significant others (e.g., support, counselling) 40 It would have been good to have someone to talk about everything [with, both] before and while my husband was at home. You felt a bit alone. Not knowing what to expect one day to the next (70b).
Demands placed on significant others to provide care 34 We were told to visit our family doctor and that he would organise my husband’s rehabilitation. My husband has type one diabetes and was unable to give himself his injections. I had to do this four times a day, as well as bathe him, shave him and work while looking after two young children (107b).
Need for additional services (i.e., employment of more staff or provision 29 of greater number of therapies) There are limited allied health services in the country and it is often harder to get therapists to take [compensable] clients. It took a long time to establish rehabilitation support (19b).
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Table 6.25 cont.
Factors and examples No. of participants reporting factors
Satisfaction with family member’s/friend’s outcome following TBI 28 rehabilitation Progress was obvious during the rehabilitation phase (102b).
Transition planning through continuum of care and overall care 25 coordination Given ½ hour notice of her discharge. I had been told earlier she could go to a rehab centre. Then I was told I had to look after her when I didn’t even have a bed for her except mine (40b).
Satisfaction with perceived level of competence of staff working in area of 22 TBI We were concerned about memory problems arising. The neurosurgeon was not in the least interested. He was only interested in the physical integrity of the spinal cord. He suggested we talk to the GP who was completely ignorant of these issues. We could have also received more information about anxiety and aggression (which a friend, whose husband also had a severe head trauma said was a common outcome) (13b).
Communication between staff, service providers, participants and their 20 families Staff should make sure they review the medical records in a timely manner or else listen to the patient or relevant carer. We experienced miscommunication over medication that caused exceptional stress to my husband. As well as overmedication of a blood pressure treatment (139b).
Appropriate timing of services 19 Services for TBI patients need to continued for years and services need to vary from time to time (19b).
Changed person due to TBI sequelae 18 [We] needed to know how to deal with brain injury. His mood changed, his personality changed. He got more aggressive (87b).
Involvement in setting goals and guiding care 17 We spoke with professionals about possible outcomes and steps leading up to achieving these results (180b).
Consideration of the person with the TBI and the significant other in 13 rehabilitation planning [Needed] a little more understanding of my feelings. As the spouse who had “little” to “no” information on my husband’s progress, and as the doctor was not available, I had to rely on the ward nurse (179b).
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Table 6.25 cont.
Factors and examples No. of participants reporting factors
Respect for client and family rights 9 We needed to be heard too. Often because the patient is an adult, the parents no longer have a voice. In our case because our son was 32, we were not considered to have a say. His de-facto was not the best person to be considered his guardian. A court case later to appointed us guardian, but alas too much damage had already been done (167b)
frequent of these factors were concerns regarding their satisfaction with the level of care provided, the need for additional information, the impact of staff, and the need for consistent follow-up and monitoring throughout the healthcare journey. Other major concerns unique to this group, as distinct from the concerns arising from the participants with TBI (presented in Table 5.38 in Chapter 5), include anxiety due to the uncertainty over degree of recovery, and the demands placed upon significant others to care for and/or participate in their family member’s or friend’s rehabilitation.
6.4 Discussion
According to the recollections of significant others, access to services for participants with TBI dropped markedly as they progressed through acute, inpatient rehabilitation and community-based settings. This progressive decline in access to services co-occurred with a steady reduction in satisfaction with care through acute, inpatient rehabilitation and community-based rehabilitation services. The reasons given by significant others for happiness with services were listed in Table 6.6. These reasons included degree of happiness with the level of information and quality of care provided, degree of satisfaction with transition through continuum of care stages, happiness with
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perceived degree of communication between and within services, happiness with perceived staff competence, and satisfaction with service availability.
A drop in significant others’ happiness levels through the continuum of care of adults with TBI could be related to three things. The first is that, as people move through their continuum of care, time passes and the rate of spontaneous recovery from secondary impairments drops. Therefore, significant others, as well as participants with TBI, may begin to acknowledge their impairments and become frustrated that services cannot “fix” or
“cure” them. Secondly, as people move through their continuum of care, the intensity and frequency of services initially provided in acute care slowly lessens. Those with limited knowledge of the health system may become frustrated, not understanding why service intensity reduces. A third reason is that consumers may perceive services are too infrequent to meet their needs as an outpatient or that the quality of the service they receive is compromised. Consequently, it may appear that, as consumers are coming to terms with the impairments secondary to head injury, services are reducing. This may result in the decrease in happiness with services noted by participants with TBI and their significant others throughout the continuum of care. Further research needs to be conducted in this area to examine these possibilities further.
Despite decreasing happiness levels, significant others’ abilities to continue to visit their family member or friend throughout their continuum of care remained high (i.e., approximately 90%). Regardless of these visits, significant others reported lower than expected levels of involvement in guiding the care of their family member or friend when compared to recommendations in clinical care guidelines (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; New Zealand Guidelines Group, 2006).
Even in inpatient rehabilitation, where family-centred practice is anecdotally reported as
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high (Natalie Bird, speech pathologist at Caufield General Medical Centre, personal communication, 6th October 2008) around 40% of significant others reported no involvement in the setting of client goals, stating that they did not feel like an active team member.
The finding in this study that significant others experienced high levels of anxiety on client discharge is concerning. Reasons for their anxiety and proposed solutions were briefly listed in this chapter. Moderators of carer stress were also discussed. However, future research needs to be conducted in this area to discover clinically relevant and useful techniques to address significant others’ anxiety on client discharge.
The common experiences of anxiety on client discharge among significant others may be due in part to the poor degree of support, both financially and emotionally, available at discharge of clients. Significant others taking part in this study reported low levels of access to carer’s allowances, accommodation and travel support, and carer support services. Given the low degree of uptake reported in this study, it appears that support services for carers need to be more readily available or marketed to a greater extent, so that those services available will be utilised when needed.
6.5 Conclusion
This chapter has outlined the results from the second questionnaire (i.e., significant other questionnaire) in Stage 1, addressing the fourth, fifth and sixth research questions from the perspectives of significant others of participants with moderate to severe TBI.
More specifically, this chapter addressed the reported continuum of care observed and experienced by significant others, the impact of location on this continuum of care, as well as other reported factors which were perceived to have influenced the continuum of care
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experienced. The results pertinent to these questions have been discussed. The following chapter compares the individual recollections of participants with TBI and their matched significant others. Questions about the reliability of the recall of those with TBI and their significant other are addressed.
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CHAPTER 7
STAGE 1: COMPARISON OF THE CONTINUUM OF CARE RECOLLECTED BY
PARTICIPANTS WITH TBI AND THEIR SIGNIFICANT OTHERS
7.1 Introduction
As stated in Chapter 6, the use of significant others to establish recall reliability in
TBI research is not uncommon (Cusick, Gerhart, & Mellick, 2000). Significant others’ involvement in TBI research is encouraged because of the nature of TBI, a condition which often results in behavioural or cognitive impairments, memory loss and/or communication and literacy difficulties. These impairments affect the conversational abilities and reliable recollections of TBI survivors (Cusick et al., 2000). Although the aim of this study was not to “test” individual pairs’ recollections for accuracy, but to explore individual experiences, ascertaining the degree of alignment in recollections of both participants with TBI and their significant others in a research study is said to strengthen the reliability of its findings
(Cusick et al., 2000).
The recall of adults with TBI is often questioned, given associated cognitive, communication and memory deficits, but significant others’ ability to answer research questions has also been considered questionable. An example of significant other bias was found by Clarridge and Massagli (1989), who reported that female spouses tended to under- report illness, symptoms and extent of impairments in their partners with TBI. In contrast, other researchers have found that significant others had more negative perceptions and over-reported problems in illness severity (Rothman et al., 1991; Sneeuw, 1997). One of the reasons for the inconsistencies in significant others’ recall in TBI research is a typical design flaw. Cusick (2000) stipulated that when the type of significant other is
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predetermined (e.g., only the spouses of people with TBI), poor alignment of the recollections of significant others and adults with TBI is noted. However, when participants are able to select their own type of significant other, as in this study, consistency between the recall of participants is improved (Cusick et al., 2000).
Research has also suggested that participants’ and significant others’ relationship affects agreement (Burleigh, Farber, & Gillard, 1998; Colantonio, Dawson, & McLellan,
1998; Magaziner, Simonsick, Kashner, & Hebel, 1988), as does level of caregiving (Long,
Sudha, & Mutran, 1990; Sprangers & Aaronson, 1992), degree of cognitive deficits of the person with TBI (Magaziner et al., 1988) and the types of questions asked (Tepper, Beatty,
& DeJong, 1996). With regard to the last, it has been shown that agreement is more likely to be reached when adults with TBI and their significant others are asked about motor function or productivity as opposed to cognitive function and social interaction (Tepper et al., 1996).
As part of this study, a comparison of the recollections of participants with TBI and their matched significant others was conducted. The recollections of both parties, as documented in the responses to questionnaires, were compared. The data arising from this comparison have been collated and the results are presented in this chapter to address the following research question:
1. Do adults with TBI and their significant others provide the same recollections
about services when reflecting on the care the person with TBI received
following their head injury?
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7.2 Method
Two questionnaires were distributed to 1,771 Victorian adults with TBI. The first of these questionnaires targeted adults with TBI (see Appendix B), and the second targeted significant others (see Appendix C). The data presented in this chapter reflect the experiences of pairs who each completed and returned a questionnaire. Participants with
TBI were able to select the significant other they wished to complete the second questionnaire. This procedure was expected to improve the reliability between adults with
TBI and their significant others (see Cusick et al., 2000).
Two hundred and two questionnaires were returned by participants with TBI and
184 questionnaires were returned by their matched significant others. In other words, only one questionnaire was returned in some instances. Both questionnaires were returned in 171 cases. The purpose of the analysis presented in the following sections was to compare the recollections of participants with TBI and their significant others, to determine whether their recollections were consistent. This was achieved by point by point comparison of responses to the questions duplicated across the questionnaires (see Table 7.1).
Table 7.1 Corresponding Questions on Questionnaires
Questions targeting Questions targeting Type of question participants with TBI significant others of (Appendix B) participants with TBI (Appendix C)
10 14 Personal judgement 12 15 Personal judgement 13 16 Direct recall 14 20 Personal judgement 26 30 Personal judgement 28 31 Personal judgement 32 32 Personal judgement 33 33 Direct recall 34 36 Direct recall 35 37 Direct recall 51 43 Personal judgement
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There were 11 questions which were comparable between the two questionnaires.
Within those 11 questions, some involved direct recall (e.g., Did you or your family member/friend access inpatient rehabilitation services?), whereas others, such as the example in Figure 7.1, involved judgement. Research investigating the reliability between adults with TBI and their significant others suggests variations in recall reliability if personal judgement is required, as the personal beliefs of one person do not necessarily align with those of another (Cusick et al., 2000). Therefore, comments relating to degree of agreement of recollected experience are appended after the reporting of data on questions of direct recall. Comparison of questions involving personal judgement is also discussed, in a different section. Discussion of responses involving judgement was not used to demonstrate degree of agreement in recollected experience between participant pairs.
Figure 7.1 Example of Point by Point Comparison
Question 10 – Appendix B
10. How happy were you with your care in the acute hospital?
Extremely Not Okay Very Extremely Unhappy Happy Happy Happy
Question 14 – Appendix C
14. Were you happy with your family member’s/friend’s care at the acute hospital? (please circle your response)
Extremely Not Okay Very Extremely Unhappy Happy Happy Happy
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7.2.3 Example of Data Analysis
An example of point by point comparison to determine consistency of agreement between Question 10 from Appendix B and Question 14 from Appendix C is now provided.
Questions 10 and 14 represent the same question asked in both questionnaires of the different participant groups (i.e., Question 10 was asked of a participant with TBI whereas
Question 14 was asked of the significant other, see Figure 7.1). These questions related to participants’ satisfaction with the level of care provided in the acute care stage. In this question, participants indicated their degree of satisfaction by circling their response on a
Likert scale. Responses available included extremely unhappy, not happy, okay, very happy and extremely happy.
Point by point comparison of participants’ responses was then completed. In doing this, the response of a participant with TBI was compared to that of the significant other. If both reported their satisfaction with acute care was okay, agreement was said to be reached.
Similarly, if the participant with TBI rated satisfaction as very happy and the significant other rated satisfaction as okay the responses were considered comparable, given they fell within one degree of agreement. However, if the participant with TBI rated satisfaction as very happy and the significant other circled not happy the responses were considered not to fall within one degree of agreement, and therefore the perceptions were not considered comparable.
7.3 Results
7.3.1 Demographics of Participant Pairs
Both questionnaires were completed by 171 participant pairs (PPs). PPs consisted of one participant with TBI and the corresponding significant other. The characteristics of the
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individual participant groups (i.e., participants with TBI, significant others) are presented below.
7.3.1.1 Participants with TBI
The characteristics of participants with TBI within PPs were similar to the characteristics of participants with TBI as a whole. Table 7.2 presents an overall comparison. Therefore, to avoid repetition, only the differences in characteristics are discussed here.
Table 7.2 Comparison of Onset Information Recollected by Participants with TBI in Whole Group (n=202) Versus in Participant Pairs (n = 171)
Onset information recollected by participants with % of WG % of PPs TBI
Age at onset < 18 years 10.4 12.3 19-25 years 24.8 25.7 26-35 years 19.8 18.1 36-45 years 16.3 18.8 46-55 years 22.8 19.9 56-65 years 5.9 5.8
Cause of TBI Motor vehicle accident 38.6 38.6 Motor bike accident 15.3 15.2 Fall 17.3 15.2 Assault 7.4 7.6 Other 21.3 23.4
Reported severity of TBI Mild 13.9 13.5 Moderate 15.8 15.2 Severe 32.2 35.1 Very severe 34.7 33.3 Missing data 3.5 2.9
Note. Whole group (WG) refers to the demographic data reported in Chapters 5 and 6 relating to the groups, participants with TBI and their significant others, as a whole. Participant pair (PP) refers to the recollections of one participant with TBI and the corresponding significant other.
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In comparisons of the demographic data for participants with TBI in the whole group (WG) (see Chapter 5, Tables 5.1 and 5.2) and PPs, it can be seen that participants with TBI within PPs were slightly younger (i.e., 2% more participants were aged 25 years or younger) and were more likely to rate their TBI as more severe (i.e., 3% more participants felt their head injury was of a severe nature) than participants in the TBI group as a whole.
At the time the questionnaires were completed, participants with TBI within the PPs group were also more likely to be married (i.e., 3% more participants in PPs reported being married, see Table 7.3). In addition, participants with TBI within the PP group were slightly more likely to be employed (i.e., 2% more participants when compared with the group as a whole), and were also more likely to report that they needed help when completing the questionnaire (i.e., 3% more participants reported needing help to complete the survey, see Table 7.3).
Given that there were slightly more married participants in the PP subgroup, and the fact that participants with TBI within the PP group were more likely to be younger, have more severe head injuries and be more likely to be employed, it might be expected that these participants had greater access to, if not greater need for support from significant others. This inference is supported by the fact that participants within PPs reported having had greater access to a significant other to help them complete their survey. After helping participants with TBI complete the first survey, significant others might then have been motivated to complete the second questionnaire in order to have their say.
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Table 7.3 Comparison of Demographics of Participants with TBI in Whole Group (n=202) Versus in Participant Pairs (n = 171)
Demographics for people with TBI % of WG % of PPs Age < 18 years 0 0.0 18-25 years 22.3 24.6 26-35 years 23.3 22.2 36-45 years 17.3 18.1 46-55 years 20.8 19.3 56-65 years 13.4 12.3 66 years or older 0.0 0.0 Missing data 3.0 3.5
Gender Male 68.3 68.4 Female 29.2 28.7 Missing data 2.5 2.9
Cultural background Aboriginal or Torres Strait Islander 0.0 0.0 Caucasian 86.6 86.5 Italian 2.0 2.3 Greek 1.0 0.6 Chinese 1.5 1.2 Vietnamese 0.5 0.6 Other 5.0 4.7 Missing data 3.5 4.1
Education Primary school 3.5 2.9 Mandatory completion of high school 39.6 39.8 TAFE qualification 26.7 29.2 Undergraduate degree 13.9 14.0 Postgraduate degree 12.4 10.5 Missing data 4.0 3.5
Number of hours in paid employment < 8 hrs 2.0 2.3 9-16 hrs 4.5 4.7 17-24 hrs 5.0 5.3 25-32 hrs 7.4 7.6 33-38 hrs 38.1 40.4 Missing data 4.0 2.9 Not employed 39.1 36.8
Marital status Married 26.7 29.2 De facto relationship 14.9 14.0 Separated 8.9 7.6 Single 46.5 45.6 Missing data 3.0 3.5
Help completing survey Yes 33.2 36.8 No 62.9 59.6 Missing data 4.0 3.5
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7.3.1.2 Significant Others
As with the demographic data presented for participants with TBI, the characteristics of significant others within the PP group were generally similar to those of significant others as a whole (see Table 7.4). Therefore, to avoid repetition, only the differences in characteristics are discussed.
Significant others within PPs were slightly more likely to be either related or married to the adult with TBI for whom they responded (i.e., 87% of significant others in
PPs reported being either a family member or spouse of the person with TBI, compared to
85% of the WG). Furthermore, significant others within PPs were slightly more likely to be younger at the time the questionnaire was completed (i.e., 11% of significant others reported being younger than 35 years of age, compared to 10% in the WG), married (i.e.,
1% more significant others in PPs also reported they were married) and have a higher unemployment rate (i.e., 2% more significant others in PPs reported being unemployed at the time the questionnaire was completed). Significant others in PPs also appeared to hold a greater number of undergraduate and postgraduate university degrees compared to the significant other group as a whole (i.e., 28% in PPs compared with 27% in the WG).
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Table 7.4 Comparison of Demographics of Significant Others in Whole Group (n=184) Versus in Participant Pairs (n = 171)
Demographics of significant others % of WG % of PP Relationship to person with TBI Professional carer 1.3 1.8 Family member 54.9 55.0 Spouse 29.9 31.6 Partner 9.8 8.2 Friend 3.8 3.5 Other 0.0 0.0 Age < 18 years 1.0 1.2 19-25 years 0.5 0.6 26-35 years 8.7 9.4 36-45 years 19.0 19.3 46-55 years 40.8 40.4 56-65 years 23.9 22.8 66 years or older 6.0 6.4
Gender Male 20.7 20.5 Female 79.3 79.5
Marital status Married 65.2 66.1 Separated 7.1 6.4 De facto relationship 12.5 12.3 Single 14.7 14.6 Missing data 0.5 0.6
Employment Not employed 34.2 35.7 Employed < 8 hrs 3.8 4.1 Employed 9-16 hrs 5.4 4.7 Employed 17-24 hrs 7.6 7.0 Employed 25-32 hrs 10.3 10.5 Employed 33-38 hrs 18.5 18.7 Employed > 39 hrs per week 20.1 19.3
Cultural background Aboriginal or Torres Strait Islander 0.5 0.6 Caucasian 82.6 82.5 Italian 2.2 2.3 Greek 2.2 1.8 Chinese 1.6 1.8 Vietnamese 0.0 0.0 Other 7.1 7.0 Missing data 3.8 4.1
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Table 7.4 cont.
Demographics of significant others % of WG % of PP
Highest educational certification received Primary school 2.2 2.3 Mandatory completion of high school 39.1 39.8 TAFE qualification 30.4 28.1 Undergraduate degree 10.9 11.7 Postgraduate degree 15.8 16.4 Missing data 1.6 1.8
7.3.2 Do Adults with TBI and Their Significant Others’ Provide the Same Recollections
About Services When Reflecting on the Care the Person with TBI Received Following Head
Injury?
The data addressing this research question, Do adults with TBI and their significant others provide the same recollections about services when reflecting on the care the person with TBI received following head injury?, are presented in two sections according to the type of participant response required. The first section discusses the data pertaining to questions requiring direct recall, and the second discusses data arising from questions which required participant judgement. Data presented in both sections reflects the degree of agreement in recollected experience between participant pairs on individual questions.
7.3.2.1 Questions Requiring Direct Recall
Little variation was noted in WG recall regarding participants’ recollected experience in accessing inpatient rehabilitation services. Further analyses comparing the responses of PPs also indicated that 83% of participants with TBI report the same degree of access to inpatient rehabilitation as their significant others (see Table 7.5).
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Table 7.5 Comparison of Recollected Experience Between Participants with TBI and Their Significant Others
Recollection of Recollection of Recollection of access to inpatient being informed of being given hospital rehabilitation discharge date contact details on discharge n % n % n % Recollected same 142 83.0 107 63.6 90 52.6 experience Recollected different 29 17.0 64 37.4 81 47.4 experience
This level of agreement between PPs was not, however, as closely matched when participants were asked to reflect on whether they were informed of the discharge date from residential services prior to being discharged. Only 64% of PPs reported the same experience when reflecting on this question. Regardless of the poor congruence of PP data, group data reported in Chapters 5 and 6 suggest the opposite. That is 85% of participants with TBI and 88% of significant others in the WG reported being informed of the discharge date, but only 64% of PP recollected the same experience of this event.
It is thought that this degree of incongruence in PPs’ recollections may be due to the fact that emotions are often heightened during the period of discharge from residential rehabilitation. Adults with TBI may feel ready and excited (54% of adults with TBI reported these emotions on discharge; see Chapter 5, Table 5.24) whereas significant others may feel anxious (71% of significant others reported feeling anxious on client discharge; see Chapter 6, Table 6.18). These strong emotions are likely to lessen the reliable recall of both parties. The inconsistencies in recollection of client discharge are therefore not surprising.
Significant variation in recollected experience also existed when PPs were asked to recall whether they were provided with the contact details of their inpatient rehabilitation
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hospital to call if needed following discharge: only 53% of PPs recollected the same experience (see Table 7.5). In this situation, it could be thought that the recall of significant others might be more reliable, as the adults with TBI would still have been in the initial stages of recovery and therefore might be unable to reliably recall what occurred during discharge planning. However, the consequence of heightened emotion in both members of
PPs would also affect reliable recall at this time.
7.3.2.2 Questions Requiring Personal Judgement
The expected variation on level of agreement between PPs was also noted in their answers to most questions requiring judgement. Questions requiring judgement compared in this chapter include the perception of whether a service was specialist, the perception of whether improvements were needed in the acute or inpatient stages of care, and the perception of whether discharge from rehabilitation was appropriately timed.
Only 60% of adults with TBI and their significant others responded the same way when reflecting on whether the service they accessed was specialist. Furthermore, only
64% of PPs agreed on the appropriateness of inpatient discharge timing, and only between
61 and 65% of PPs agreeing on the need for improvement in all specified stages of the continuum of care (see Table 7.6).
The low levels of agreement (e.g., around 60% PP agreement) in responses to questions requiring personal judgement and the higher level agreement (e.g., 80% PP agreement) in responses to questions requiring direct recall may be explained by the results of a study exploring participant-proxy reliability in TBI outcome research by Cusick et al.
(2000). They assessed the reliability between adults with TBI and their self-selected proxies. The 204 adult participants with moderate-severe TBI and their proxies had been
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Table 7.6 Degree of Agreement on Some Questions Requiring Personal Judgement (n = 171)
Perception that Perception that Perception that Perception that inpatient acute care stage inpatient discharge from rehabilitation needed rehabilitation inpatient was specialist improvement stage needed rehabilitation service improvement was appropriately timed n % n % n % n % Reported 102 59.6 104 60.8 111 64.9 109 63.7 same perception Reported 69 40.4 67 39.2 60 35.1 62 36.3 different perception
Note. The data from each participant pair (n = 171) were analysed using point by point agreement. It is important to note that some participants reported they did not access inpatient rehabilitation. Therefore, their responses to these questions were not applicable. However their partner responded regardless, indicating they thought they accessed inpatient rehabilitation. Therefore, no participant pair could be excluded. If both participants in a pair responded that these questions were not applicable, they were identified as being in agreement.
discharged to the community from inpatient rehabilitation between 6 months and approximately 5 years before that study took place. Cusick et al. found that the strongest degree of agreement between adults with TBI and the proxies was for questions assessing concrete, observable information (e.g., Did you access inpatient rehabilitation? Were you seen by a doctor? etc.). PP agreement was found to be at its poorest on questions relating to cognitive function and money management, and out of home activities.
Even though congruence in recollection seems best established by questions involving concrete observable behaviour, the data presented in Table 7.7 documenting PPs’ perceptions of happiness with services show that PPs’ satisfaction levels in this study were closely matched. For example, 75% of PPs reported the same level of agreement, within one satisfaction level (e.g., extremely happy and very happy), when reporting their satisfaction with care in the acute stage. Likewise, 78% of PPs reported similar levels of
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happiness when reflecting on the care they received in inpatient rehabilitation and 71% reported a similar degree of happiness with their care in an outpatient setting (see Table
7.7).
Table 7.7 Degree of Agreement on Happiness by Stage of Care
Agreement Stage of Care Acute Inpatient Outpatient rehabilitation rehabilitation N % n % n % Same degree of satisfaction 79 46.2 94 55.0 64 37.4 Within one satisfaction level 129 75.4 133 77.8 121 70.8 Within two satisfaction 151 88.3 150 87.7 138 80.7 levels
Note. See Appendices C and D for scales used to determine satisfaction level.
The reason for PP alignment in happiness perceptions throughout the continuum is unknown. One potential reason could be that, given the life-altering implications of having a TBI, it is likely the participants with TBI and their significant others had relayed the story of their rehabilitation to many people in the past (i.e., other family members, friends and interested community members). When telling their story, it is likely they would have discussed their happiness with care and reasons for it, thereby influencing each other’s original perceptions. Failure to account for the potential effects of changes in recall over time due to memory bias and event re-interpretation is a weakness of this study.
7.4 Discussion
The use of multiple sources of information to aid the recollection of past health experiences is not unique to this study; others have used this technique also (Clarridge &
Massagli, 1989; Long et al., 1990; Magaziner et al., 1988; Rothman et al., 1991; Sneeuw,
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Aaronson, Osoba, Muller, & al., 1997). This study also supports the findings of previous studies in finding that when comparing different source recollections, responses to questions involving direct recall are often more congruent than those which require individual judgement (Cusick et al., 2000). The findings from this study are consistent with previous research in that PPs’ recollections of experience were more closely aligned in responses to questions requiring direct recall (e.g., access to services) than to those requiring participant judgement (e.g., perception of a service being a specialist service).
This finding makes intuitive sense. Aside from comparing the recollections of PPs on responses to direct versus judgement questions, the data reported in this chapter also suggest that PPs’ emotional states might affect recollection. For example, inconsistent recollections about discharge planning could have been influenced by the very different emotional states of PPs upon discharge, with 54% of participants with TBI reporting being excited on discharge and 71% of significant others reported being anxious.
Consideration and comparison of reported experiences of adults with TBI and their significant others is considered essential in strengthening the validity of both their claims
(Clarridge & Massagli, 1989; Cusick et al., 2000; Sprangers & Aaronson, 1992). Given the finding that PP data on questions relying on direct recall are consistent I feel confident that the recollections of participants with TBI and their significant others represent their reality, the basis of which is vulnerable to the impact of stress, heightened emotion, memory bias and event reinterpretation. Nevertheless, consideration of perceived experience over actual experience is essential given research which suggests that positive perceptions are more closely related to positive health outcomes, regardless of actual experience. For example, with regard to the question of access to support, a number of studies have demonstrated that perceived support is more closely related than “enacted” support to health outcome (Ergh et
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al., 2002; Sander, High, Hannay, & Sherer, 1997), where enacted support refers to the actual helping behaviours provided to an individual.
7.5 Conclusion
This chapter has outlined the results from a comparison of data from participants with TBI and their significant others, on corresponding questions from the first and second questionnaires. This analysis was conducted to answer the seventh research question proposed in this study. More specifically, this chapter addressed whether participants with
TBI and their significant others provided the same recollections about services accessed when reflecting on the care received by the person with TBI. The findings suggest that recollections were relatively consistent on questions requiring direct recall. However, PPs’ recollections appear vulnerable to the effects of stress, heightened emotion, time since injury, memory bias and event reinterpretation. Nevertheless, their perceptions have a significant ability to impact on health outcomes and therefore remain valid.
The following chapter explores the experiences of participants in greater depth.
Chapter 8 presents data from the second stage of this research project, the interviews. The
23 participants invited to take part in this second stage were selected from the 171 PPs whose Stage 1 data were discussed in this chapter.
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CHAPTER 8
STAGE 2: THEMES ARISING FROM INTERVIEWS EXPLORING
PARTICIPANTS’ EXPERIENCES OF THEIR HEALTHCARE JOURNEY
8.1 Introduction
The importance of considering consumer preferences in the evaluation and allocation of healthcare services has been established (Blight, 1991; Brown, 1991;
Humphreys & Mathews-Cowey, 1997; Humphreys, Rolley, et al., 1991; Keleher, 1999;
National Rural Health Policy Forum, 1999). However, these retrospective reviews of TBI service allocation and need evaluations are based on USA or Canadian medical records of
TBI clients, TBI hospital databases or health professionals’ opinions (Gray, 2000;
Johnstone et al., 2002; Murphy, 2004; Schootman & Fourtes, 1999). Few studies have considered the perspectives of adults with TBI and their family members. Ascertaining the views of Australians with TBI, their families and the communities within which they live is essential to ensure a close match between the needs of people with TBI and the services that are provided. When needs and services are closely aligned, equity in health service allocation may be possible.
It was the aim of this stage of the research to investigate the needs, barriers and experiences of adults with TBI and their families when accessing their continuum of care following TBI. Interviewing within a phenomenological framework (Minichiello, Aroni,
Timewell, & Alexander, 1995) was chosen as the method for this stage, allowing participants to speak freely about their experiences without being confined to any preconceived topics for consideration, as they might have been in Stage 1 (i.e., questionnaires). The inclusion of this second stage of the research meant that two different
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sets of complementary data (i.e., large scale questionnaire quantitative data and smaller, more in-depth interview qualitative responses) could be collected, compared and triangulated to better understand the experiences of adults with TBI and their families when accessing services throughout their healthcare journey. The phenomenological framework implemented in the second stage allowed for greater consideration of the subjective experiences of adults with TBI and their significant others. It allowed me to gain better insight into the way adults with TBI and their significant others understood their injury and the care they received.
Stage 2 of the study addressed the following questions:
1. What is the reported continuum of care experienced by adults with TBI and their
significant others in Victoria?
2. What factors do adults with TBI and their significant others believe influence
the continuum of care experienced in Victoria?
These questions were also addressed to a certain extent in other stages of the study.
8.2 Method
A detailed description of the procedure for Stage 2 can be found in Chapter 4,
Section 4.4.2. For ease of review a brief overview of the procedure is provided here.
Participants were invited by telephone to take part in interviews once their questionnaires from Stage 1 had been completed and participants had indicated interest in continuing to be involved in the research. Participants called were informed of the aims of the second stage of the research, time commitments required, need to audio-record interviews for later transcription, and assurances of confidentiality. All participants invited to participate took
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part in interviews. I drove to participants’ homes or other place of their choosing to conduct interviews. All interviews recorded were later transcribed.
Transcriptions were initially organised by coding. Codes were then categorised, and these categories were combined into themes as described by Lupton (Minichiello, Madison et al., 1999). During this process interview transcriptions were constantly revisited to ensure that coded extracts of participants’ data retained their meaning within the context of participants’ original utterances. Throughout the data analysis process, transcripts were checked for saturation of themes. Saturation occurred in this study when no new information or themes were derived from subsequent participant interviews (Guest, Bunce,
& Johnson, 2006). When saturation of themes was reached, no further participants were recruited. Sixteen interviews involving a total of 23 participants were completed.
8.3 Results
8.3.1 Demographics of Participants
Fourteen adults with moderate-severe TBI, four partners and five parents of the adults with TBI were recruited to take part in the second stage of this research. As detailed in Chapter 4, participants in this stage of the study were recruited by indicating their willingness to continue to be involved in the research after the completion of Stage 1 (see
Question 69 in Appendix B and Question 52 in Appendix C). Details about the participating adults with TBI, partners and parents are presented in Table 8.1. For a summary of each interview, see Appendix L.
The analysis of data from these interviews revealed five major themes:
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• Acceptance and readiness: I never recognised my head injury until 2 years after
the accident
• Support: She’s the rock there. She’s the shoulder I need all the time
• Advocacy: We finally demanded, which we learnt to do, demand
• Right service at the right time: Things could have been different
• Mismatched expectations: It wasn’t what I thought it should be.
These themes are discussed and their component dimensions and elements described. A synthesis of the themes with reference to the literature and implications for clinical practice is then presented. For easy reference, Table 8.2 contains an overview of the themes.
Throughout the presentation of the findings, quotes from the participants are used to illustrate the themes. To ensure that the voices of all the participants were represented, an effort was made to include a number of quotes from each participant.
Participant experience within this research is complex, interactive and located within the ongoing nature of time. Hence, it is difficult to separate out and chunk themes of experience. However, for the purpose of presenting the research findings the themes are presented in linear order. A model demonstrating the interaction of themes across time is presented in Chapter 9.
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Table 8.1 Demographic Details of the Sixteen Interviews
Interview Pseudonym Gender Participant role Age of Funding ARIA category Stages of continuum of care number participant allocated received
Interview 1 Bettina Female Person with TBI 56-65 years Public funding Highly accessible Acute Paul Male Partner 46-55 years Outpatient
Interview 2 Peter Male Person with TBI 18-25 years Compensable Highly accessible Acute Kara Female Partner 19-25 years Inpatient – specialist Outpatient
Interview 3 Melinda Female Person with TBI 36-45 years Public funding Highly accessible Acute Inpatient - non specialist Outpatient – non specialist
Interview 4 Trish Female Person with TBI 26-35 years Compensable Accessible Acute care only Martin Male Partner 26-35 years
Interview 5 Oscar Male Person with TBI 26-35 years Private Highly accessible Acute insurance Inpatient – specialist Outpatient – specialist Monitoring
Interview 6 Daniel Male Person with TBI 46-55 years Compensable – Highly accessible Acute TAC Inpatient – specialist Outpatient – specialist Monitoring
Interview 7 Timothy Male Person with TBI 46-55 years Compensable Highly accessible Acute Bernice Female Partner 36-45 years Inpatient – specialist Outpatient – non-specialist
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Table 8.1 cont.
Interview Pseudonym Gender Participant role Age of Funding ARIA category Stages of continuum of care number participant allocated received Interview 8 Katrina Female Person with TBI 26-35 years Public funding Accessible Acute Inpatient – specialist Karen Female Mother of person 56-65 years Outpatient – specialist with TBI
Interview 9 Liza (on behalf Female Mother of person 46-55 years Compensable Highly accessible Acute of Joel) with TBI Inpatient – specialist Phillip Male Father of person 46-55 years Outpatient – specialist with TBI Ongoing therapy
Interview 10 Vera Female Person with TBI 36-45 years Public funding Highly accessible Acute Outpatient – non-specialist
Interview 11 Patricia (on Female Mother of person 36-45 years Private Highly accessible Acute behalf of John) with TBI Insurance Inpatient – specialist
Interview 12 Justin Male Person with TBI 56-65 years Public Funding Highly accessible Acute Outpatient – non-specialist
Interview 13 David Male Person with TBI 26-35 years Compensable Highly accessible Acute Inpatient – specialist Nellie Female Mother 56-65 years Outpatient – non-specialist
Interview 14 Pauline Female Person with TBI 56-65 years Private health Highly accessible Acute Inpatient – specialist Outpatient – specialist
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Table 8.1 cont.
Interview Pseudonym Gender Participant role Age of Funding ARIA category Stages of continuum of care number participant allocated received Interview 15 Dominic Male Person with TBI 46-55 years Compensable Highly accessible Acute Inpatient – specialist Outpatient – non-specialist
Interview 16 Derek Male Person with TBI 18-25 years Compensable Highly accessible Acute Inpatient – specialist Monitoring
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Table 8.2 Overview of Themes Identified from Interviewees
THEME 1 – Acceptance and readiness: I never recognised my head injury until 2 years after the accident.
Dimension 1: Recognizing impairments Dimension 2: Emotional reaction to impairments - Element 1: Surviving depression Dimension 3: Adapting to impairments and redefining self - Element 1: Identity trade offs - Element 2: Learning to cope Dimension 4: Accepting impairments and readiness to engage with rehabilitation
THEME 2 – Support: She’s the rock there. She’s the shoulder I need all the time.
Dimension 1: Need for support Dimension 2: The family as a source of support Dimension 3: Support on return to the community
THEME 3 – Advocacy: We finally demanded, which we learnt to do, demand.
Dimension 1: The self as an advocate Dimension 2: External advocacy - Element 1: Role of the family - Element 2: Formal services
THEME 4 – Right service at the right time: Things could have been different.
Dimension 1: Appropriate funding Dimension 2: Timing of service provision Dimension 3: Provision of ongoing care
THEME 5 – Mismatched expectations: It wasn’t what I thought it should be.
Dimension 1: Expectations of services provided - Element 1: Distances required to travel to access services - Element 2: Expectation that services be provided if needed - Element 3: Reasonable length of stay when accessing services Dimension 2: Control over treatment decisions Dimension 3: Expectation of staff specialty Dimension 4: Expectations upon community integration
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8.3.2 Theme 1: Acceptance and readiness
Overview of Theme 1
THEME 1 – Acceptance and readiness: I never recognised my head injury until 2 years after the accident.
Dimension 1: Recognising impairments Dimension 2: Emotional reaction to impairments - Element 1: Surviving depression Dimension 3: Adapting to impairments and redefining self - Element 1: Identity trade-offs - Element 2: Learning to cope Dimension 4: Accepting impairments and readiness to engage with rehabilitation
People who sustain a head injury often suffer irreversible physical, emotional, behavioural and cognitive impairments which impact upon every aspect of their life (Khan et al., 2003). Denial of these impairments, as a coping strategy or as a result of a cognitive or psychological disability leading to lack of insight, can seriously interfere with a person’s participation in rehabilitation and ultimate recovery (Fleming, Strong, & Ashton, 1998).
Varying levels of self-awareness, insight or impaired acceptance can cause problems with motivation, engagement in therapy, compliance with suggestions for behavioural change and use of compensatory strategies (Fleming et al., 1998).
The development of self-awareness and acceptance of impairments following TBI is not automatic. Individuals need time to test their new capabilities, process their limitations, grieve their impairments and grapple with a new sense of self (Charmaz, 1997). The time needed to come to terms with impairments sustained as a result of a TBI was a major theme articulated by all participants in this study.
Four dimensions in processes of acceptance were identified in the data:
“recognising impairments”, “emotional reaction to impairments”, “adapting to impairments
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and redefining self” and “accepting impairments and readiness to engage with rehabilitation”. These dimensions are explored in turn.
8.3.2.1 Dimension 1: Recognising Impairments
Experiencing and defining impairments is the first of three stages defined by
Charmaz (1995) in her landmark study of how people adapt to chronic illness. In this first stage of Charmaz’s model of adaptation, those with chronic illness experience an altered body which in turn leads to redefinition of their impairments and the need to make life reassessments. According to Charmaz, impairments experienced as a result of chronic illness such as head injury can be experienced in the physical, mental, psychological or economic domains.
Acknowledgement of the experience of physical impairments by adults with TBI in this study was frequent. For example, Oscar (PWTBI9) reported I lost coordination in the left side of my body. Katrina (PWTBI) reported: The injury happened on the right side, so everything on the left is, well not everything, but things can have a propensity to be compromised.
In contrast to physical impairments, acknowledgement of behavioural or cognitive impairments for participants in this study appeared more problematic. For example, Justin
(PWTBI) was easily able to recall: Every vertebra in my neck and, I think, every one in my chest was cracked or broken. Three vertebrae in my chest were also crushed. However, when asked to reflect upon an impairment affecting his memory he reported: No I’ve been very fortunate [with my memory], although earlier he had stated: my memory was in enormous internal explosion, so I knew that I’d done something pretty bad.
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Likewise, when Daniel (PWTBI) was reflecting on changes in his mental health, he was keen to quantify that his impairments were not major ones: In the early days after my accident I had some psychiatric type problems, not major ones, but just behavioural things that needed to be looked at.
8.3.2.2 Dimension 2: Emotional Reaction to Impairments
Recognising and experiencing impairments following TBI was reported by participants as being a frightening time. This is demonstrated in David’s (PWTBI) reflection:
It spun me out… I realise that now. If I have too much going on, I freak out. I’m not good with crowds or parties now because my hearing is a little bit different. I’m not deaf, but in the right ear it sounds like I’m listening down a tunnel. So things are different. I could be talking to you, this close, but there’s someone over there talking, and they’ll become more prevalent than what you’ve got to say and because I don’t know what’s going on I tend to wig out a bit. That scares me, so I don’t go anywhere now. I’m too scared, I don’t want to put myself into a situation and freak out.
However, with time, it appeared that participants were able to overcome this fear, making their adaptation to the presence of impairments easier. Charmaz (1997) discussed the relationship between time and self-adaptation among the chronically ill. At this level,
Charmaz reported, people see their illness as merely an interruption. They might take “time out” from their usual life to adapt to their illness, yet at this stage their impairments do not warrant a change in their sense of self. For example, David reflected later in the same transcript:
I was lucky… it was a shock to them [treating health professionals] too, the fact at how well I did and how easy I came out of it. I’ve got to agree, in a weird way, nothing has changed. I’m still who I am. I lean a bit to the left now and I can’t open my mouth fully and I can’t raise my eyebrow.
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This side [left hand side of body] is still a bit stuffed, but it’s a small price to pay.
As adults with TBI begin to recognise their impairments, while attempting to hold onto their former sense of self, common emotional reactions include anger, self-pity and depression (Charmaz, 1997). The first element of the second dimension “emotional reaction to impairments” explores participants’ experiences of depression.
ELEMENT 1: SURVIVING DEPRESSION
Once participants with TBI recognised their impairments the majority reported suffering a period of depression. Karen (mother of PWTBI) reflects on this when discussing her daughter Katrina’s recovery: she had depression which was apparently quite common after head injury.
The experience of depression following TBI is not uncommon. According to Satz and colleagues (1998), depression is one of the major emotional disorders to occur following moderate to severe TBI. The onset of depression in adults with TBI needs to be closely monitored, given its association with impaired cognitive functioning, exacerbation of existing neurological deficits and diminished motivation to participate in rehabilitation
(Satz et al., 1998).
The onset of depression or mood disorders associated with the recognition and experience of multiple impairments following TBI is not surprising, given intensified feelings of estrangement from one’s past familiar body and loss of self (Charmaz, 1995).
These feelings of estrangement and depression are not only experienced by people with
TBI, the lives of their significant others are also affected. According to the results of two critical literature reviews (Brooks, 1991; Perlesz et al., 1999), 23–73% of carers of adults
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with TBI report clinically significant levels of anxiety and depression when attempting to come to terms with their family member’s impairments. Liza (mother of PWTBI) reflects on the impact of depression on her life following her son’s TBI:
Sometimes you just, you would, you’d fall in a heap and we would just sit here. You just thought, I just, I want to go now. I don’t want to be here anymore. You couldn’t eat, you didn’t do anything.
Dominic (PWTBI) reported: the depression, you’ve got to be careful of that, indicating that depression was something to be wary of given its potential impact on recovery. The relationship between depression and decreased motivation to participate in therapy has been documented in research investigating prognostic factors following TBI
(Fleming et al., 1998; Satz et al., 1998). This research suggests that the greater the period and severity of depression a person experiences following TBI, the poorer their motivation to participate in therapy. This trend was described by Patricia (mother of PWTBI) when she described her son John’s unwillingness to engage with her while he was in inpatient rehabilitation:
He was deadpan. There was no expression. There were no smiles. There was no conversation. I thought, this is not John, and I even got frustrated one day and said “John, if you’re not going to talk to me I might as well not come in.”
As stated earlier, the onset of depression is not unique to adults with TBI.
Significant others in this study also reported experiencing depression as they came to terms with their family member’s impairments. For example, Liza and Phillip (parents of
PWTBI) reported:
You needed to be there [sitting by their son’s bed in ICU] but we didn’t feel useful down there and also the depression bit because you’d just wake up in the morning and think, “I don’t want to move, I just want to hide in bed and not face this.”
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Pauline (mother of PWTBI) reiterated these sentiments when she also reflected on her son’s recovery:
I didn’t cry for a long time. It was one day, I think I went to work. I don’t know where I was but I just fell in a heap. I was telling my husband and he said he did the same thing.
Frank (2002) discussed the need for family and carers to be given time and support to acknowledge the losses they have experienced through their family member’s illness.
When reflecting on his own experiences of illness, Frank reported “the caregiver often has more difficulty finding time and recognition for mourning. While I was ill we knew that she, the caregiver, needed to mourn and recognise losses as much as I, the ill person. We both had to let our grieving run its course” (Frank, 2002, p. 39).
8.3.2.3 Dimension 3: Adapting to Impairments and Redefining Self
In the second stage of Charmaz’s (1995) model of adaptation to chronic illness, people were noted to re-evaluate their new selves and make subsequent identify trade-offs as they weighed their losses and gains and revised their identity goals. Identity trade-offs as defined by Charmaz (1995) refer to the process people with illness go through in opting for one identity over another after evaluating their goals and current strengths and weaknesses.
While attempting to adapt to and redefine their new selves, participants in this study overtly compared their new and old selves, as well as their new self versus others’ new selves (i.e., the new selves of other people with TBI). The practice of comparing past and new selves is the third dimension of the first theme, acceptance and readiness.
Frank (2002) described the process of redefining self as drawing a new map and this, he argued, is achieved by ill people hearing themselves tell their stories. Zaruches
(Frank, 2002, p. 1), describing the effects of chronic illness on self, reported “the
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destination and map I had used to navigate before were no longer useful.” Chronic illness is never really “over”, so a new self has to be re-storied.
ELEMENT 1: IDENTITY TRADE-OFFS
Once participants in this study recognised their impairments, they talked about a process they went through in which they compared who they were with impairment to who they had been before sustaining their head injury. This is demonstrated in Oscar’s (PWTBI) reflection:
It is a major thing. I had a national role where I’d fly to Sydney every other week and stay in hotels and do my job. Then, after my head injury, I had to go back to my parent’s house, in my own room.
Bettina (PWTBI) also reported on her own loss:
I fall apart in airports on my own now and yet before that, you know, I’d flown to other countries, sometimes on my own, sometimes business, sometimes pleasure. I lost a tremendous amount of confidence. I went from being, I suppose, a motivational lecturer to doing mail runs.
Reminiscences of past selves where work and self were highly valued were common. Now that participants no longer had what they considered meaningful work, they used reminiscing as a way of searching for meaning in their lives. According to Charmaz
(1997), the “loss of self” in connection to chronic illness is accompanied by fundamental changes in a person’s life and lifestyle, particularly with increasing physical handicap and declining capability. In an attempt to create continuity and meaning, Oscar and Bettina reminisce about a past self in order to create value in their present selves. They try to recover what has been lost as a result of their TBI. In reviewing their past life, they are attempting to come to terms with the present and perhaps trying to reconcile the person they once were with the less able person they have become. The past, however, importantly
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offers predictability and is more understandable than the present. Review of the past can offer safety, a time of productivity, good health and independence. These, after all are all core cultural values in society (Charmaz, 1997).
Not only participants with TBI compared their new versus old selves; significant others also reported engaging in this comparison (i.e., comparing the PWTBI to who they used to be). For example, Peter (PWTBI) reported: the old man [father] reckons I didn’t have a clue where to start and he goes, “gee that’s no good” because I used to knock up things and yeah, like put things together pretty easy. David (PWTBI) made similar comments with regard to return to work: they [employees] were a bit disappointed by the fact that when I came back I wasn’t quite who I was and they frowned on that I suppose.
When people return to work following illness or injury, the “before and after” contrasts become striking. These contrasts call into question their sense of self and undermine their taken-for-granted notions about their capabilities. The process of comparing new and old selves, without adapting to current capabilities, is not always beneficial. Without adaptation, people with TBI will continue to attempt to reach prior life goals (i.e., keeping a pre-existing job). However, these goals may no longer be attainable.
Yet, by ignoring or minimising the impairments that belong to their “new selves”, people with TBI can continue to preserve their old sense of self.
According to Becker (1997), memory both illuminates discontinuity and enables people to maintain the illusion of continuity and self amid change. Because of memory, lives appear to have continuity. Memory is not simply a personal, subjective experience: it is socially constructed and present-orientated and thus reconfigures experience. People filter memories according to what is meaningful (e.g., Oscar’s role as a high-flying executive and Bettina’s role as a motivational lecturer) and, through these meanings, they
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interpret the events in their own lives. Memories used to maintain a sense of continuity are highly selective. Past life influences the current moment in time through this selection process, enabling the illusion of consistency to be maintained amid the facts of change
(Becker, 1997).
This preservation of continuity comes at a price. Preservation of their old self through continued attempts to reach old goals becomes increasingly difficult as participants continue to struggle against their impairments (Charmaz, 1995). Oscar (PWTBI) reflects on the process of needing to adapt in order to move on:
I mean eventually you’ve got to let go and let it pass but I think I cried every day at some stage during the day for 3 months. I was messed up. I was very, very messed up.
Oscar’s quote demonstrates not only the importance of moving on but also the importance of mourning for the old self now lost. Frank (2002) identified the importance of this process when reflecting retrospectively on his experiences of illness following his battle with cancer. He reflected,
That night I knew that after surgery I would never be the same. By then I was aware that chemotherapy could effectively shrink the tumours along my back. Even so, I would not be the same. Surgery and chemotherapy would irrevocably break my body’s continuity with its past. I did not dread what I would become, but I needed to mourn what I had been. It was like saying goodbye to a place I had lived in and loved. I tried to take care of my body, and it had treated me well enough, but now treatments I did not yet understand would change it into something else. (Frank, 2002, p. 38)
The comparison of new and old self is consistent with the transition which people with chronic illness go through, as identified by Charmaz (1995). She reported that people initially plan their lives as if they are not ill and have similar life expectations to those they would have had for their old self. But as the illness progresses they make identity trade-
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offs, no longer seeking to be who they were but seeking a new self. This new self may have fewer expectations and set more realistic goals for the future (Charmaz, 1995).
Another comparison made by PWTBI in this study was to compare themselves, their experience and their recovery to others who had also sustained a TBI. Typically, they met these others in rehabilitation. This helped participants on two levels. On one level, the comparison of self to others with TBI helped PWTBI gain insight into their own impairments. For example, Bettina (PWTBI) reflected:
I started seeing a man who also had a brain injury. He was in the army and had a major accident. I think the funny part about it was the thing we most had in common is my face. It is constantly numb and it drives me mad. If I get a piece of hair on my face, I start dry retching. Apparently, it’ll always be like that and he knew exactly how that felt because he had the same problem. But he would get into the most awful rages. His rages were worse than mine. He was also drinking a hell of a lot more. That was a pretty big wakeup because I’d look at him and think “Is that what I was doing to Phillip [partner]?”
This point was echoed by Peter (PWTBI), who stated: [seeing someone else with a
TBI] makes me understand life. Where I’ve come from and what I’ve been through, like my body’s been through.
On another level, participants reported that by comparing themselves and their recovery to others with TBI, they became grateful that they were not even more impaired.
Patricia (mother of PWTBI) reflected on this when she discussed her son’s recovery, stating:
It was good he could see people that were worse than him. Unfortunately, he wasn’t in the phase where he would befriend people. Normally he makes friends everywhere but he was sort of very closed off anyway. But he saw others and I don’t think it hurt. I don’t think it hurt to see “there but for the grace of God”.
However, when comparing themselves to others with disabilities, the PWTBI felt that they themselves did not belong in the same group of people with disabilities. For
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example, Karen (mother of PWTBI) relayed a conversation she had had with her daughter
Katrina, in which Katrina very clearly did not identify with others with disabilities:
At Swinburne, they had once a week classes for disabled people and Katrina went there and there were probably 9 or 10 people who would go there. They were learning art things, it was a semester type of thing. And Katrina didn’t like that at all because she said “they’re all so disabled”. I said to Katrina “you are disabled too”. She did not think she was disabled.
ELEMENT 2: LEARNING TO COPE
Following the acknowledgement of impairments and comparison to others after sustaining a TBI, adults with TBI and their significant others reported that they needed to change their thinking and develop strategies to manage their bodies and their lives after experiencing loss, or disconnect in order to help them cope with the impairments they faced. One strategy reported by Vera and Peter (PWTBI) was to get over it. For example,
Vera reported: I just get on with it. I can’t be bothered, just get on with it. If there’s a problem, I’ll go and see someone about it, but I don’t think it’s [the head injury] a real problem. Similarly Peter stated:
If something bad happens, you just go “oh well”, work harder, forget about it. Keeping yourself occupied, it helps a lot because you sit there and you, if you’re sitting there not doing anything. You’re sitting there thinking and you’re conjuring up all these ideas in your head and oh, but then if you’re working it doesn’t bother you as much because you’ve got less time to think about it.
Peter’s behaviour described in the excerpt above was defined by him as a coping strategy. However, this coping strategy could be defined by health professionals as a form of denial. According to Charmaz (1997), denial is a label which is given following the judgment of an ill person’s behaviour. Denial can be considered an elastic category, in that it can be seen to stretch according to health professionals’ agendas. Responses judged by
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professionals to indicate denial (e.g., bewilderment, shock, fear, impaired ability to communicate or articulate concerns) may actually reflect the process people go through when attempting to learn about how their illness affects their lives. Given the limited role played in treatment planning by participants with TBI and their significant others in this study, premature diagnosis of denial may be detrimental for treatment. Professionals need to be careful not to label people, particularly those with TBI, as in denial, as this often prevents their partnership in treatment planning.
Trish (PWTBI), who reported suffering from post-traumatic stress disorder as a result of her accident, stated that changing her thinking in order to help her cope was not enough. She reported she needed to physically give herself time to prepare for events (e.g., meeting unfamiliar people): I’ve been preparing myself, I’ve known you were coming in advance so it was good you know, I’ve had a chance to prepare.
Trish reported that she had not as yet learnt to cope with her head injury and the reasons that caused it. She (PWTBI) stated :
I still live in fear like I’m going to die and like even offered all my body to a donor. I’m an organ donor. If I die I want to dedicate my body. So I’m at this stage, you know, I never live my life and say I will be fine, from now on “I’m just perfect”, no I’m not.
Once participants reported learning to cope with their impairments, they reflected on how lucky they had been to survive or recover to the extent they had. Katrina (PWTBI) demonstrates this belief:
I’m lucky, I’m really lucky. I defied my surgeon’s prophecy that I wasn’t going to make it out of the coma. I didn’t wind up in a wheelchair. I’ve got the use of my legs. I’ve got a reasonably good quality of life when all is considered, I’m a lucky girl.
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Pauline also reported that she was one of the lucky ones. There are five beds there
[at the rehab hospital] and some of the other cases were just so sad. I’m not like those others. Peter also felt he’d had a good run. I’m lucky, I’m very, very luck. Very lucky.
Learning how to cope with impairments sustained as a result of a TBI is an essential process. In research on caregiver adaptation following TBI, Hanks, Rapport and Vangel
(2007) observed that effective problem solving as a means of coping was associated with reduced carer stress. Knight, Devereux and Godfrey (1998) also found that coping strategies used by families to accommodate the TBI of one member were strongly predictive of their overall adjustment. The findings from these studies and others (e.g.,
Wells, 2005) have important implications for the rehabilitation of those with TBI and emphasise that a major part of this work is helping the individuals, their relatives and families adapt to the changes in the person they live with.
8.3.2.4 Dimension 4: Accepting Impairments and Being Ready to Participate in Therapy
The process of recognising, grieving, adapting to and accepting impairments following injury has been documented in many instances of loss (i.e., death, divorce, retirement, chronic illness) (Charmaz, 1989, 1995; Thompson, 2002;). However, what is unique to the TBI population and therefore warrants closer examination is that current TBI literature proposes that, until people with TBI have recognised their impairments they are not ready for rehabilitation (Fleming et al., 1998).
Establishing the balance between acceptance of injuries, development of insight and readiness for therapy is difficult for both people with TBI and their rehabilitation clinicians.
Factors which appear to significantly affect this balance are the presence or absence of depression and motivation (Fleming et al., 1998). As discussed earlier (see Theme 1,
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dimension 2, element 1), once people become aware of their impairments following head injury, depression is not uncommon, and once people become depressed their motivation to engage in therapy is often diminished (Fleming et al., 1998). Therefore, the questions arise:
Should clinicians engage people with TBI in therapy when they have limited insight, which may affect their motivation? Or should clinicians wait until client insight has emerged, even though at this stage people with TBI are more susceptible to depression? Answering these questions is beyond the scope of this research. However, participants in this research reflected on this issue and therefore it became the fourth dimension within the theme acceptance and readiness.
Bernice (wife of PWTBI) recalled the balancing act between insight and readiness to engage in therapy when she reflected on Timothy’s (PWTBI) lack of insight and the usefulness of inpatient rehabilitation at the time it was provided. In discussing early attempts at rehabilitation Bernice reports:
We found it really hard. He just should have stayed [in the rehabilitation hospital] but, with his insight, because he had all the frontal lobe personality problems, he just was not in a position to take strategies on board. As we look back on it too, it’s probably good that he did get all these services later because his brain had settled down. He was starting to think a little bit more clearly. As he said, he doesn’t remember the rehabilitation hospital, he doesn’t remember anything there. So would he have had value from staying down there and getting everything? Would it have been any use to him? Physically he would have really benefited… but I just don’t know whether he would have mentally.
When reflecting on services received later in Timothy’s continuum of care, Bernice says:
They’ve actually said to us that we’ve probably been the quickest people to actually have success with those strategies. For a lot of people it takes a long time for them to implement them and the head injury person to actually take them up. But they said we were quite quick in implementing them and Timothy responding to it. But then he wanted to change. He knew that there were problems. He didn’t like how it was progressing, his
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rehabilitation. So he wanted to change and I think that’s probably the key to it. Even though often now he says that I’ve got the problem, I should see the psychologist, he’s fine. Most of the time he knows he has the problem.
Melinda (PWTBI) also reflects on the usefulness of therapy before insight development in the following quote:
I had a physiotherapist who was trying to teach me to walk straight and I remember I was very disappointed and at one stage, I was in the stage were I was freshly hurt and not accepting what had happened to me. They asked me, I never forget, I had a huge white line in front of me and he asked me, can you walk this line and I said to him, “What do you think I am, a drunk person? I can walk straight!”
The quotes presented under this theme demonstrate the importance of considering the degree to which people with TBI and their significant others accept the impairments they have sustained as a result of their head injury before they are ready to engage fully with therapy. This dimension is the final and arguably most important dimension within the first theme: acceptance and readiness.
8.3.2.5 Summary
In the context of the first theme, acceptance and readiness, Charmaz’s (1997) landmark research is a useful framework for analysis, as it considers how people with chronic illness attempt to make sense of an often unpredictable, now disorderly and sometimes overwhelming body. Charmaz (1997) discussed the impact of illness on sense of self. According to her, people experience serious chronic illness in one of three ways: as an interruption of their lives, as an intrusive illness or as immersion in illness.
Those who experience their illness as an interruption see it as a separate event, distinct from other life events. They see it as a “time out” from usual life. Viewing their illness as an interruption means that the illness does not warrant a change in their sense of
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self. Once an injury or illness becomes intrusive, however, maintaining the self becomes more difficult. When experiencing illness as intrusive, some accept their illness and build their lives and selves around it, while others try to keep their illness invisible and separate from their sense of self. Charmaz (1997) found that most commonly, people learned to tolerate and reconcile themselves to the impact of illness on their lives, as seen in this study, and ignore the potential for future impact. In doing this, they were able to retain some sense of their former self. Charmaz (1997) found that it was only when the effects of illness or injury broadened that people found themselves immersed in the illness, losing their sense of self in what to them appeared to be endless, undifferentiated time. It may be at this time that depression takes hold.
The process of reconciling a disturbed sense of self as people confront their changed body and mourn for the loss of previous functioning was discussed in the first theme. The quotes presented in this theme demonstrated the importance of allowing people with TBI time to recognise and emotionally react to the impairments sustained following their TBI.
Charmaz (1997) contended that when redefining one’s self-concept as a result of chronic illness, negotiation between identity trade-offs occurs as individuals confront their physical losses, change future goals and surrender control. A new sense of self emerges from this struggle between physical disabilities and abilities and personal goals, priorities and values.
Once this occurs, it seems that people with TBI are then able to adapt to their impairments and redefine themselves and their new life goals. Following this, the participants with TBI in this study reported being ready to engage in rehabilitation. These findings indicate that all the dimensions of acceptance and readiness need to be considered when determining the appropriate timing of health service provision following TBI,
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particularly given the links between depression and reduced motivation (Fleming et al.,
1998; Satz et al., 1998).
It is important to be aware that recognition of, reaction to, adaptation to and acceptance of impairments following TBI is a complex yet essential journey travelled by people with TBI and their significant others. More often than not, this journey is cyclical, as people with TBI experience setbacks, complications and secondary conditions. When this occurs, the provision of constant support is beneficial. The next theme presented in this chapter discusses the importance of support in the lives of people with TBI and their significant others following head injury.
8.3.3 Theme 2: Support
Overview of Theme 2
THEME 2 – Support: She’s the rock there. She’s the shoulder I need all the time.
Dimension 1: Need for support Dimension 2: The family as a source of support Dimension 3: Support on return to the community
The second theme encompasses the importance of support, primarily the need for support, the role of the family in providing support and the need for support for both participants with TBI and their families once they return home. These elements are now discussed in turn.
8.3.3.1 Dimension 1: Need for Support
The need for support provided either formally or informally is not unique to the brain injured population (Brown et al., 1999; Corrigan John, Whiteneck, & Mellick, 2004;
Farmer et al., 2003; Johnstone et al., 2002; LeFebvre et al., 2005; P. L. Sample, Tomter, H.,
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Johns, N., 2007). Other studies, on grief and loss through onset of illness or death, report the need of people for support (Becker, 1997; Frank, 2002; Thompson, 2002). Participants in this study in particular reported going through a period of fear following their head injury, for which they needed support. Vera (PWTBI) reported: You’re scared of everything for a while. They’re just things that you need to talk to people about. It’s nothing really major, I suppose, but it [support] probably would have been nice. Melinda echoed this need when she reported:
I needed real help. Who can really help me through this? Like I told you, it is 6 years after my surgery this year and I still live in fear. I have nightmares. I dream that I’m dying. My husband has to wake me up because in my dreams I see myself dead and I cry so deeply. He wakes me up, you know, from my death or the fear of death. I think “oh my God not again”.
The importance of support following TBI was identified by both participants and their significant others in the first stage of this research project. The need for financial, emotional and family support for people with TBI has also been frequently discussed in the literature (Koskinen, 1998; LeFebvre et al., 2005; Murray et al., 2006; Sample & Darragh,
1998). These needs were expressed in the interviews, with participants such as Bettina
(PWTBI) reporting:
I think the counselling aspect, well not so much formal counselling but someone to sit down and say “now look, we have been here for you. From what we know of people who have gone through these sorts of accidents, this is the sort of thing that is going to happen”.
Bettina’s wish for formal support was mirrored by Vera (PWTBI) who said: in hindsight, I wish I had counselling after my accident, because I went through a stage where
I was terrified of everything. Melinda’s sentiments were congruent with those of Vera and
Bettina:
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I needed lots of counselling, psychologist etc. People who have experience with brain injury. Those who can tell the difference in your recovery. How much you’re getting better. Because today it is going to be 6 years since my injury but I don’t know how much I have improved.
As demonstrated by Melinda, the need for support does not lessen with time.
Longitudinal research has shown that carers and people with TBI undergo extreme stress following a TBI (Brooks et al., 1986; Brooks et al., 1987; Brooks & McKinlay, 1983;
Marsh et al., 1998; Marsh et al., 2002). This degree of stress and carer burden does not reduce with time. In fact, seminal work conducted by Brooks and colleagues (Brooks et al.,
1986; Brooks et al., 1987; Brooks & McKinlay, 1983) suggested that carer stress significantly increases from the first year following TBI to the fifth year, with the level of burden not altering on review 7 years following TBI. Clinical care guidelines stipulate the need for early and ongoing support to assist people with TBI and their significant others to come to terms with the effects of the head injury (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003). Guidelines stipulate that the provision of support can improve the psychosocial adaptation of the family to the person with TBI and thereby result in better outcomes for both adults with TBI and their families (New Zealand
Guidelines Group, 2006).
One PWTBI who received formal group services from a psychologist following his accident reflected on the merit of the sessions he received. He stated:
Two times a week we would have a 2-hour session where we would talk about a particular issue. That was an opportunity where you could talk to other outpatients who had similar but different experiences, get their thoughts and that sort of thing (Daniel, PWTBI).
A significant other also received formal counselling services and reported:
The rehabilitation hospital used to send somebody to come out and talk to me. Initially I think it was once a week. That was great. It was while Katrina was out with her carer. The counsellor would come and spend an
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hour with me and I'd cry and all of that which was terrific. I found that really great. I wish it could have lasted longer really. And I wish I still had it you know, because it's very difficult holding on to it all. And it's confusing, there's so many things, even now, 5 years later, so many things that are still related to her head injury. There are still things that have to be done and remembered and changed (Karen, mother of PWTBI).
Formal support services were not the only source of emotional support that participants reported finding beneficial. Informal supports such as family, friends, workmates and colleagues were also valued as emotional supports. For example, Peter
(PWTBI) reported that his family and fiancée were invaluable sources of emotional support: I used to talk to the folks and talk to Kara about it. Bernice (wife of PWTBI) reported that her girlfriend, who also had a son who had sustained a head injury, was a great source of support:
It was helpful for me emotionally to say “he did this today”. You know, to have someone who understood what I was going through. For me it was because Sue and I could commiserate with each other about what we were going through. We could understand what was happening in her life and in my life.
Patricia (mother of PWTBI) also reported that her workmates and contacts in the health industry comforted her, as she stated:
I’ve got people that work in the industry which makes a difference. I suppose I always feel a bit comforted that if I need something to happen I know someone who’ll know someone, who’ll know someone, who’ll know someone.
Charmaz (1997) argued that informal supports such as family provide a buffer against social isolation. As can be seen in the interview excerpts presented above, both participants with TBI and their significant others reported needing this buffer. Charmaz further argued that sociability affirms that the self remains and that illness does not claim all of one’s being. Even “superficial sociability”, she stated, assumes significance to isolated, ill people, as they welcome social contact from whomever they can get it.
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The need for social contact and support was identified both by participants with TBI and their significant others. This need for support has been identified not only by those who request it but also by those who provide it. In a study of health providers’ perceptions of
TBI systems of care, Sample, Tometer and Johns (2007) found that healthcare professionals were concerned about the lack of support for their clients and, in particular, their clients’ family members. Health providers in that study reported that families needed more information about TBI, better access to counselling and more opportunities for respite. In their study, one health professional stated “You’ve got about 85% of brain injured people getting divorced … about 95% on anti-depressants. The family can’t figure out what’s going on. Kids say ‘Dad has gone off the deep end, he is yelling at us, which he never used to.’ The wife or husband is saying, ‘I’m married to a different person’” (Sample et al.,
2007, p. 717). These findings demonstrate the need of significant others for support. The following dimensions of the theme support explore the role of the family as a source of support as well as the need for support once residential services cease and participants return to their community.
8.3.3.2 Dimension 2: The Family As a Source of Support
Aside from the family themselves needing support, family members’ provision of physical as well as emotional support was reported by participants as essential to ensure participants’ best possible outcomes following TBI. Oscar (PWTBI) stated:
Had my parents not been there I would have been a lot worse off. I mean I had my room at my house and they fed me, etc. If I hadn’t had that, or somebody to go to, I don’t know how I would have recovered. Like, I’m sure a lot of people are in that situation, it certainly would have been harder.
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David (PWTBI) echoed these sentiments when referring to his mother, Nellie:
She’s the rock there. She’s the shoulder I need all the time.
When reflecting on the role family played following TBI, significant others reported being physically present and even providing care throughout their family members’ hospital-based services. For example, Nellie (mother of PWTBI) reports: We didn’t miss a day. We were always there with him, talking to him. We gave him crosswords to do and he started doing them. Karen (mother of PWTBI) relays a similar story:
I was there at 7.00 o'clock every morning to untie her and give her breakfast because they would not. The hospital was short staffed. Her breakfast would not be given to her and because she had no interest in eating she wouldn’t eat. She had to be taught to eat, she had to be taught to speak, and she had to be taught to walk. She had to be taught all of these things again as do all people with a serious brain injury. And yes, I would feed her and it was difficult to feed her but the staff didn’t have time to do it, you know. She wasn’t going to eat. They just left it.
Once their family members were discharged from formal services, the role of significant others in providing physical support continued. For example, Melinda (PWTBI) reports that her husband Drew needed to: give up his work to look after me and I had to stay with my brother and my sister in law for one month. My sister in law stayed with me constantly and looked after me and she bathed me. In addition to physically caring for their family members, if needed, significant others also reported needing to playing a role of care coordinator. For example, Bernice (wife of PWTBI) says:
Timothy hasn’t had much to do with the case managers at all. I’ve virtually been liaising with them on everything because if they do tell Timothy something, he either repeats it completely wrong or totally forgets what they say. So it's really not helpful for him to liaise with them at all and then if they tell him “no”, he doesn’t like that little word no, we have the bouts of anger. So we tend to bypass him a lot.
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As well as coordinating the care of people with TBI, significant others reported playing other roles. For example, Dominic (PWTBI) reports that his ex-partner was invaluable in the months following his discharge from acute care:
When you’ve got a brain injury you’ve got no idea. I told Naomi I was going across the road to the supermarket. I had no idea where was I going! In the regional centre we lived across the road from IGA. And I like to cook so I like to just go and buy ingredients. Anyway I went across the road and didn’t get to IGA. I turned left and ended up down the street. Naomi came and found me down the street looking at records or something. If they weren’t in my life, God knows what would happen to me.
Studies of the experiences of significant others following their family members’ or friends’ TBI support the findings above. Degeneffe (2001) in particular highlighted that significant others may need to take on additional roles, including that of carer, breadwinner, decision-maker, advocate and case manager. Although it is often important for significant others to take on these roles, a balance must be reached between taking on the roles of the person with TBI (e.g., child rearing responsibilities) and taking over these roles despite the person’s capabilities. Durgin (2000) reported that families must be careful to limit discharge restrictions (i.e., limiting the roles adults with TBI can play) put in place by conservative and sometimes overly protective significant others, as they can limit the future roles of the person with TBI. A balance must be sought between allowing and supporting independence where possible, while providing supervision and restriction to keep the person with TBI safe and adequately provided for (McColl et al., 1999).
Participants in this study also identified the need for informal support upon their return to the community.
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8.3.3.3 Dimension 3: Support on Return to the Community
When reflecting on the need for ongoing support once they returned home some participants, such as Vera (PWTBI), spoke of having received much support, which was greatly appreciated:
My neighbours around here were just fantastic. They would drop in food every day. One neighbour from around the corner would just go and do grocery shopping for Dave [Vera’s husband] and drop it off. Before I came home, my neighbours broke into the house and cleaned the place for me. They were just fantastic. I’ve never been able to thank them. Every night, they would drop in to see how I was and what was happening, and if there was anything they could do.
However others, such as Bettina (PWTBI) and Pauline (PWTBI), reported the opposite experience. Bettina stated in her case: people were embarrassed, they don’t know what to say or do. Pauline reported that her reduced participation secondary to her head injury isolated her from the community:
I couldn’t do anything. I couldn’t bushwalk. I couldn’t bike ride. I couldn’t play tennis. All my sort of social outlets went by the wayside. I’ve got terrific friends, but once they see you’re well [they stop coming to visit]. I was just out of the social loop.
According to Albert, Im, Brenner, Smith and Waxman (2002), support throughout
TBI clients’ and families’ transitions from residential services to the community is essential as they move into an environment in which services are progressively removed. Albert et al. used the metaphor of a “river flowing downward over waterfalls or rapids” (p. 176) to describe the post-discharge experiences of adults with TBI and their families, stressing the progressive decline in formal resources over time and the increasing challenges faced as they lose these services. Albert et al. reasoned that in this stressful setting, better access to
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information, support and appropriate referral services would improve the experiences of both adults with TBI and their family caregivers.
Support upon return to work was another area reported to be difficult. For example,
Oscar (PWTBI) reports: You can’t imagine how down I would get, knowing that I’m fully capable of doing jobs but I can’t get the jobs because people were too scared to employ me… People are just so nervous when it’s your brain. This reported nervousness, misunderstanding or ignorance of the nature of TBI was similarly reported in Patricia’s
(mother of PWTBI, John) account of her son’s work re-entry:
His boss was frustrated because he just wants to get his work done. You know, if you’ve got a broken arm or your arm is missing, you can see it, whereas a head injury you can’t and John by this stage was sort of back to John. “What do you mean you can’t drive? What do you mean you can’t do that? Why can’t you work more than four hours?” that sort of thing.
The transition difficulties and stigma associated with work re-entry following illness or injury were also identified by Charmaz (1997) in her study of chronic illness.
Charmaz found that even if people with illness or injury required modified work loads they might not ask for help, the social ramifications of which might appear too costly. Those with chronic illness, like the PWTBI in this study (see for example Oscar’s sentiments above), reported that they did not want any special treatment and did not want to be treated as less than they felt they were.
8.3.3.4 Summary
The second theme derived from this study reflects the need for support for adults with TBI and their significant others through the continuum of care. Support in this research refers to assistance in some way that mitigates the stresses and burdens associated
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with a person’s TBI. The need for support in this study was referred to both by people with
TBI and by their significant others. The types of support requested took two forms: informal social support (e.g., social outings for adults with TBI or aid to family members provided in the form of shared caregiving responsibilities, empathy, information or advice) and formal support services (i.e., gaining access to and using professional support resources, such as counselling services, respite care, support groups). These types of support were requested in all stages of participants’ continuums of care, but were reported to be especially important upon community integration.
As stated in Chapter 2, adults who sustain a TBI of a moderate or severe nature suffer irreversible physical, emotional, behavioural and cognitive impairments which affect their quality of life and that of their significant other. The need for ongoing emotional and family support, given the long term nature of the impact of impairments, has been previously identified (Fyffe, 1996; New Zealand Guidelines Group, 2006). The findings from my study extend the insights gained from previous research by identifying the need for emotional support and formal counselling following TBI and upon community integration, including work re-entry, and also by highlighting the importance of significant others in providing support.
Indeed, the role of significant others extended beyond being purely a support body to being an advocate. The role of significant others and adults with TBI as advocates form the basis of the third theme identified in this research.
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8.3.4 Theme 3: Advocacy
Overview of Theme 3
THEME 3 – Advocacy: We finally demanded, which we learnt to do, demand.
Dimension 1: The self as an advocate Dimension 2: External advocacy - Element 1: Role of the family - Element 2: Formal services
The third theme identified in this research was the need for people with TBI and their significant others to advocate for care. Advocacy in this case means more than just support. It requires a belief in the adult with TBI, as well as support, ability to campaign on behalf of the adult with TBI, and monetary sponsorship when necessary, in order to ensure access to services (Bastian, 1998). Advocacy in this research extended beyond just ensuring that needs were met, to ensuring that services accessed were appropriate and well timed.
The theme of advocacy had two dimensions, the need to research and advocate on your own behalf in order to access services, and the need to have an external person available to advocate on your behalf. This external person may be a significant other or a health service professional such as a case manager. These two dimensions of advocacy are now discussed.
8.3.4.1 Dimension 1: The Self As an Advocate
Many participants spoke about the need to independently research their head injury in order to understand its nature and the nature of secondary impairments. This finding reflects not only the high functioning nature of this participant group (see Chapter 5,
Section 5.31) but also the need identified by participants to be provided with more information. The need to independently research TBI is demonstrated when Karen (mother
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of PWTBI) reflects: I started reading everything I could on the internet and books that I borrowed from the library on brain injury. Derek (PWTBI) reiterated the need for research.
However, he:
Only really looked into it and read a bit about it on the internet after leaving hospital, ‘cause I didn’t know why I was getting so stressed out. I didn’t know what was happening to me. Then I looked a bit up on the internet. But I still didn’t fully understand what was happening to me.
Melinda (PWTBI) similarly spoke of the need to research when she reflected: I went to the local library, grabbed books on the brain and understanding the brain, understanding the surgery and understanding why I felt the way I felt.
Once these people with head injury came to understand their injuries, they reported a need to find appropriate services to help them cope with their impairments. For example,
David (PWTBI) reports:
This [access to services] came about by me. I basically did the deal myself. I got on the internet and looked up to see what was around. I found a website where they had a list of all the things around here, and I just looked up the ones that were closer to home.
Timothy (PWTBI) and Bernice (Timothy’s wife) expressed similar sentiments:
We have to find what’s available to us and then go to them [funding body and general practitioner] and ask if we can go to this service which we’ll probably start doing again for his pain. It has been suggested that he go to an acupuncturist for his pain. So we’ll probably have to approach them [funding body] and ask them to fund that.
The need for consumers to independently organise their care is not unique to this research. A qualitative phenomenological study of the perceptions of care access of 21 women with ABI in rural and urban Colorado identified the same need (Sample & Darragh,
1998). In that study, consumers identified that the lack of professional care coordination slowed down their rehabilitation as they had to independently find out about systems, services and rights by relying on friends, family and word of mouth. Sample and Darragh
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identified that the gaps in care experienced by participants, resulting from missed appointments, problems with paperwork completion and difficulties with care coordination, could have been avoided through the provision of a case manager or external advocate.
Like Sample and Darragh’s participants, after researching what they felt were appropriate services, participants in this study reported that it was often not easy to obtain referrals to services. Many participants reported that it was a battle and that they constantly needed to push to get the services they needed. For example, Trish (PWTBI) initially reports: They just won’t do anything. It’s a real battle to get the doctor to do anything.
Melinda (PWTBI) reiterates this point, reflecting on organising her own neurosurgery reviews: So that was in 2002, then 2003 and 2004 but they were pushed by me. They were. I asked for it. I called the hospital. Oscar (PWTBI) reports a similar need to self-advocate: I asked a lot of questions. I delved. I persisted. I argued. Like, I often got my way, but that’s through a lot of persistence and a lot of battling red tape and administration.
Although it is frustrating, Charmaz (1997) reported that for some ill people, conflict with practitioners about possible treatment modalities had positive consequences. She stated that people not only become more attuned to their bodies, but they become more self- conscious about how they wish to be treated and therefore become better advocates.
Through struggle and conflict, ill people who once may have held negative self-perceptions can come to hold autonomous views of themselves and make empowered decisions about their lives and their care.
Participants in this study reported that referral sources such as their general practitioner (GP) were often guided by them. Therefore, they needed to be familiar with the services available to them. For example, Timothy (PWTBI) states:
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I go there and I tell him [GP] what to do. And then I tell him, “can I go and see this person or can I go and see that person”. He writes out a referral for me to go and see them and away I go. He’s a puppet. I think that’s a nice way to put it.
Similarly Dominic (PWTBI) reports:
I can go to him [GP] any time I want and say all right, “Alex, you need to look more into this”. “Yeah no worries, what do you want me to look at, mate?” But again he’s too busy to sit down and go “Well what does Dominic need?” Everyone’s guided by me.
Self-advocacy was not the only form of advocacy need evident in this study. An external advocate in some cases was able to take on this role and advocate for services on behalf of the participant with TBI.
8.3.4.2 Dimension 2: External advocate
The second element of advocacy, like the first, reflects the need for someone to push for and guide the care of people with TBI. In the first element, people with TBI assume this role. In the second, an external person such as a significant other or formal service, such as case management, assumes it on their behalf. According to Charmaz (1997) advocacy within the system, notably by health professionals (i.e., nurses or social workers), is often more effective than advocacy outside the system (i.e., the self as an advocate).
ELEMENT 1: ROLE OF THE FAMILY
In this dimension of “external advocate”, the role of significant others in advocating for services on the behalf of the adults with TBI is discussed. Significant others reported that their role in advocating was particularly important in the absence of any formal advocacy service (i.e., case management) or when individuals’ secondary TBI impairments
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(i.e., impaired awareness, cognitive-communication or behavioural impairments) hampered their ability to self-advocate.
Liza (mother of PWTBI) demonstrates her need to advocate when she reflects on the need to demand attention while her son was under acute care: We finally demanded, which we learnt to do, demand. My sister said “you have got to start to demand things”.
Well, you realise that no one is going to offer. Dominic (PWTBI) makes a similar point when he recalls his partner’s experience while he was in acute care: Naomi said the nurses were terrible. Horrible people. If she wasn’t there hassling them, I don’t know what would have happened to me. Melinda also reports the need for an external advocate when she reflects on her husband’s role in facilitating her transfer from a regional hospital to a specialist acute trauma centre:
I was airlifted from the regional hospital to a specialist Melbourne hospital by my husband’s pushing. I could have died in the regional area. My husband forced the doctors. He told them, “look, she was pulling her hair out when she fainted, you know she’s got something wrong with her hair”. They were keeping me in intensive care in the emergency department in the regional hospital waiting for a doctor to come and see me. They had no idea what was wrong with me. They didn’t even go and find out. So my body started to shut down bit by bit. By that time, my husband pulled them aside and shook them up. “Hey she is dying you know”. So I could have died if my husband didn’t push hard enough to get me transferred. I would have died in the reaional hospital.
In a study of New Zealand consumers’ perceptions of TBI care access (New
Zealand Guidelines Group & Accident Compensation Corporation, 2004), the presence of an advocate often meant that participants perceived that they received a “good deal” with regard to TBI rehabilitation. Consumers in that study reported that the rehabilitation they received had been good, but they knew of others who had not been so lucky. They reported that their care was good as long as they had someone to advocate for them and as long as
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they knew what to ask for (New Zealand Guidelines Group & Accident Compensation
Corporation, 2004). The findings from the current study suggest that the experiences of consumers in Australia may be similar.
ELEMENT 2: FORMAL SERVICES
When formal services, such as case management, played a service-enhancing role they were seen as extremely beneficial. For example, Karen (mother of PWTBI) reflects:
We were very fortunate. I don’t know, somebody must have been out there looking after Katrina because she was so lucky things fell into place. She would not have recovered … had she … not had that help. She wouldn’t have if she hadn’t had people pushing for her and I had no knowledge of what went on. I was terrified that I would hinder her, I would hurt her, you know. But I think she was just fortunate having the help that she had and I think also City Mission [formal case management service] was tremendous, you know. If we had not got City Mission, and that was put in place by the Melbourne Rehabilitation Centre, we would have been in trouble. Everybody just did things for us, you know. I didn’t do it. Well, I didn’t know what I could do. I didn’t know where I could go. My life was just distressing being with Katrina, you know. I didn’t know what help we could get. We were lucky that there were people that told us what help we could get. We were fortunate.
Other participants receiving case management services reported a very different experience from that reported by Karen and Katrina. Repeated staff changes were often a problem:
It makes it very difficult because you get close to somebody or you start talking to somebody. Actually, we went down there, we met her once and then she left a couple of weeks later (Timothy, PWTBI).
The same sentiments are expressed by Peter (PWTBI):
I have a case manager. I don’t know their name. But I think they changed hands. They all swapped around and I’ve got a different case manager. Yeah, I couldn’t tell you their name.
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Dominic (PWTBI) reflects on the merits of having a central person to coordinate and advocate for the care of people with TBI:
If someone actually knew, I guess the medical side, the illness and then they could say, “okay, how about we give you something to do like this, try that”. They could give you options and chances, rather than you tripping yourself up.
Sample, Tomter and John’s (2007) findings from their qualitative study of providers’ perspectives of the systems of care for individuals with brain injury support the perceptions of healthcare consumers in this study. Healthcare providers in that study identified that the lack of linkage between services, poor care coordination and absence of external advocacy meant that services and resources available to people with TBI were rarely used. The professionals in that study considered that the outcomes of many individuals with TBI were compromised by the “painstaking and inefficient ways they had to find out about and access services and participate in activities” (Sample, Tomter, &
Johns, 2007, p. 714).
Professionals in the study of Samter et al. (2007) further reported that problems of access resulting from poor care coordination and an absence of external advocacy were compounded in rural areas where participants considered that service providers did not communicate well with each other and that therefore the continuity of care and information was not fed through to individuals with TBI. Participants’ perceptions of advocacy dependent on degree of rurality were not examined in this study. Further investigation is required in this area.
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8.3.4.3 Summary
As shown in the results from Stage 1 of this study and previous TBI research, satisfaction of adults with TBI and their significant others with the standard of physical care within acute and inpatient rehabilitation settings was high (Hodgkinson, Veerabangsa,
Drane, & McCluskey, 2000; LeFebvre et al., 2005). However, there was a perceived lack of coordination and monitoring between continuum of care stages, making the role of an advocate vital in ensuring access to services. Participants with TBI and their significant others in this study reported the need to constantly push for services in order to obtain access. However, to push for services, participants with TBI and their family members had to be able to identify the need for a service and be motivated enough to advocate for it.
Advocacy was identified by participants in this study as essential to ensuring access to services upon their return to the community. The role of an advocate might be played by the person with TBI, a family member or significant other, or by a person external to the family affected (e.g., case manager, GP or other health professional). The need for an advocate to ensure access to TBI services following discharge from residential rehabilitation has been identified internationally (Fyffe, 1996; New Zealand Guidelines
Group & Accident Compensation Corporation, 2004; Sample & Darragh, 1998; Sample,
Tomter, & Johns, 2007). Differences in access to an external advocate dependent on degree of rurality have also been suggested (Sample et al., 2007). Further research is required to determine whether rurality is a factor which determines access to formal advocacy services in Australia.
Regardless of the presence of an advocate, the participants in this study identified another process which affected their ability to access services. This process is discussed in the fourth theme, right service at the right time.
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8.3.5 Theme 4: Right service at the right time
Overview of Theme 4
THEME 4 – Right service at the right time: Things could have been different.
Dimension 1: Appropriate funding Dimension 2: Timing of service provision Dimension 3: Provision of ongoing services
The fourth theme arising from this research is the need to receive the right service at the right time. This theme involves consideration of participants’ perceptions that their outcomes would have been different if they had been allocated the right kind of funding, received services at the right time, or had access to ongoing services to meet their needs.
These three considerations form the dimensions within this theme. Discussion of these dimensions follows.
8.3.5.1 Dimension 1: Appropriate Funding
Participants in this study believed that eligibility for services and length of attendance in services following TBI was dependent on the type and amount of funding that was allocated to them to pay for their care. Perceptions of restriction of access to services according to funding have been identified in research evaluating TBI service utilisation
(Gray, 2000; Kelly & Headway, 1999; Kolakowsky-Hayner, Kreutzer, & Miner, 2000;
Papastrat, 1992; Turkstra & Kennedy, 2008).
In this study, the belief that funding restricts services is reflected in Trish’s
(PWTBI) sentiments as she discusses her ability to access counselling sessions:
They [TAC] said “Well we’ll pay for five appointments” and she [counsellor] said “It’s going to take a lot more than that”, so she’s going to write out a treatment report to send to them so they’ll approve more appointments.
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Similarly, Karen (mother of PWTBI) reflects on the services Katrina received as a result of the funding she was allocated:
Well Katrina had a case manager who organised a carer for her. That was with the financing from the Support and Choice Program that Katrina had. There was funding there for Katrina to have a carer to take her out for 3 hours. I think it was it twice a week? Perhaps it was twice a week initially.
Bettina (PWTBI) reports the opposite experience. She reflects on her poor access to services, which she speculates resulted from her lack of allocated funding:
I’ve probably fallen between the boards, haven’t I, because I wasn’t TAC, it was not Workers’ Comp, it wasn’t any of those. There weren’t any dollars there. So I’m cynical. If there’s no dollars, people don’t worry.
Participants with allocated funding to pay for their health services considered they were lucky. Pauline (PWTBI) states:
I was so lucky. My private health insurance covered all of my stay at the Melbourne Rehabilitation Hospital. It covered all the therapists, it covered my specialists. Whenever I went back to see Dr [name of consultant] I didn’t have to pay a thing. That would have cost an absolute fortune, so I was so lucky. See, I don’t have extras because I don’t need it. I worked out years ago it wasn’t worth it. See, I had to get a taxi to rehab because I couldn’t drive. I put that on my tax. It came to about $1,200 or something. I kept all the receipts and I put that on my tax.
Those who did not have funds allocated but needed to access care reported self- funding their care. For example, Melinda (PWTBI) reports:
I didn’t have private insurance but I privately paid. Like, I paid the full charge for the MRI tests. I paid the full charge for the brain surgeon. I paid full price for a psychologist to see me all the time.
Pauline (PWTBI) also stated that she needed to take out a loan to self-fund the final outpatient appointments needed for her care. She took out this loan because she wanted to make as good a recovery as possible. She believed that the risk of her impairments worsening due to her lack of therapy was worth meeting the cost herself:
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So in the end, I had to borrow $10,000 [to cover my expenses]. You know, not being allowed out of bed and not being able to walk. You want to be independent. I don’t know what the specialists’ fees were, but it was quite costly.
Those who were allocated compensable funding to cover their care felt they were lucky because: it would have taken longer going through the situation [without compensable funding], I’d only be half way to where I am now (Peter, PWTBI). However, one who did not receive compensable funding reports:
We’ve been waiting for a year and a half. We’ve been waiting for Katrina to go to transitional living care which has now come up, thank goodness. So for 5 years it’s sort of been waiting for the next step and the next step. If Katrina had been compensable, I think there would have been a lot of difference. She would have probably gone to a better rehabilitation centre where she would have had more intense rehabilitation. It also would have happened sooner (Karen, mother of PWTBI).
These sentiments indicate that adults with TBI and their significant others often perceived that those who received compensable funding received more specialist services in a more timely fashion than those with public funding. Further support for this finding was demonstrated by David’s (PWTBI) experience when he attempted to make an outpatient appointment to explore his suitability for lapband surgery. He reports:
I got all excited when I got the letter. I thought “cool, March”. But I didn’t take into fact that it was 2008, and of course I got all hyped up and excited and then they said, “No, it’s 2009”. If I could get private health insurance – bang, tomorrow. That would be better.
Not only in Australia has the impact of funding on access to needed healthcare been identified by people with TBI and their significant others. It has been recognised in qualitative and quantitative research internationally (Barnes, Frank, Montgomery, &
Nichols, 2005; LeFebvre et al., 2005; Sample, Tomter, & Johns, 2007). For example, access to funding for healthcare services was predictive of rehabilitative service provision
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to adults with TBI in a US study conducted by Barnes et al. in 2005. They reviewed the medical records of 712 adults who had sustained a TBI as a result of a motor vehicle accident. They found that although funding was not a predictor of ICU admission or length of stay, it was predictive of access to allied health services following acute care.
A Canadian study by Lefebvre et al. (2005) showed that allocated funding similarly affected access to services as percieved by adults with TBI, their families, and the health professionals and physicians who provided their care. Lefebvre et al. identified that accessibility to services during critical care and rehabilitation was adequate; it was only during community integration that most adults with TBI and their families felt that resources were more accessible if they were compensable clients. Canadian physicians and professionals in this study also stated that services were easier to access if a person was compensable.
Aside from the impact of allocated funding on access to care, perceived appropriateness of the timing of service provision was identified by participants in this study as having an affect on their outcome following TBI.
8.3.5.2 Dimension 2: Timing of Service Provision
The second dimension of the theme, the right service at the right time, is the view of participants that, had services been provided at the appropriate time, their outcome following brain injury would have been different. The benefits of well timed rehabilitation are particularly important following brain injury, given the potential impact of neuroplasticity and the need to maximise early functional gains during neural growth.
When compared to various other populations with impairments, those with brain injury have been shown to make the most gains in rehabilitation (Carey, Seibert, & Posavac,
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1988). Early intervention has been argued to be most effective (Mackay, Bernstein,
Chapman, Morgan, & L.S., 1992), yet readmission to rehabilitation 12 months after injury has also been shown to result in positive outcomes (Goranson et al., 2003; Tuel, Presty,
Meythaler, Heinemann, & Katz, 1992).
In this study, participants commented on the potential for delays in treatment to impact upon the extent of their recovery following their TBI. For example, Trish (PWTBI) states:
My psychologist is amazed that it has taken so long. She is kind of like “well, you should have been referred to me years ago and it wouldn’t be this bad now. You wouldn’t be having this many problems. It should have been looked at a lot sooner”.
Timothy (PWTBI) and Bernice (his wife) report similar delays in Timothy’s care, which they feel resulted in him not reaching his peak physical potential:
If he would have stayed in Melbourne, he would have got all the services then. But because he wouldn’t stay there, he was just getting himself so upset about leaving, they just thought “Well, go home”. But when we got back here, there were no services here for him and it took us probably 18 months to 2 years to get into the nearest head injury unit. He just should have stayed in Melbourne but he, with his insight, he just was not in a position to stay. But probably, as we look back on it, he would have really benefited physically from staying down there because now he’s got lots of scar tissue because the physiotherapists [here] put hot packs on him and that was all. Whereas down there they really worked him in that gym.
Dominic (PWTBI) reported similar delays in treatment during his transition from hospital-based to outpatient services. He states: The services didn’t start till quite a few months later. Like 6 months maybe, even. However, Dominic did not feel that this delay meant that he had a different outcome following his head injury. He stated, however, that because of this lack of service, he had had inadequate support as he was transitioning from hospital to home.
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8.3.5.3 Dimension 3: Provision of Ongoing Services
Participants with TBI and their significant others also wished for services to be available when they believed they needed them. The participants particularly wished that services could be continued once they left hospital. They perceived that access to ongoing services might have changed their outcome. However, the common experience seemed to be that once hospital-based services ceased, follow-up was rare.
For example, Trish (PWTBI) reports: I was never given any after-care. Once I was discharged from the hospital, that was it. I never received any outpatient care or anything like that. I didn’t receive any information about my accident or my condition. Likewise
Bettina (PWTBI) reports: It was all of a sudden like you’re on your own. Patricia (PWTBI) comments: There was nothing, the doctor said they were going to some sort of follow-up but there was nothing, and Melinda (PWTBI) also reports: They never did a follow-up to see if I recovered, if I am healthy enough … Nobody came, absolutely nobody.
Participants who received follow-up services felt they were beneficial but still wanted more. For example, Nellie (mother of PWTBI) reports:
I felt there probably wasn’t enough follow-up for him. They gave him some, but then all of a sudden it just stopped. We haven’t heard from them since. I felt they stopped and that was it. He needs more now.
Bettina (PWTBI) and Phillip (partner) acknowledged that services might not be able to be continually provided. However, they suggest:
Even if they had have been able to give us a list of services, it may have saved us a lot of drama and hassle and heartache. They need to make you aware of this may happen and if that happens, do this and give you a checklist or something.
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In contrast, Daniel (PWTBI) reflects on the importance of ongoing care and follow- up, not just for the benefit of the person with TBI but also for the clinicians who treated that person:
Whether they just get in touch with you every now and again, I know they are busy people but, “Hi, how things are going?” Even for their benefit, they can say well, “Oh, we must have done a really great job, this guy is doing this, or she is really…”. I know a lot of people who have been TBI patients have had career-changing or family-changing circumstances and I have not and that is wonderful for me. I think it would help. It would be interesting, or informative, for them to see what happens down the track.
8.3.5.4. Summary
The transition of clients such as those in this study from rehabilitation to home is an essential process, yet it has received little attention in the literature. According to Hersch
(2003), problems related to transition planning arise in part due to poor weaning processes.
Weaning clients from therapy is an important part of the discharge process, which is in itself a crucial aspect of rehabilitation as a whole. In her research into experiences of ending aphasia therapy, Hersch (2001, 2003) found that discharging clients from services was problematic for therapists, who needed to balance their roles as both client advocate and resource gatekeeper. She found that client discharge from services was not often clearly expressed, negotiated or well documented.
Problematic weaning processes during transition planning may have impacted upon the experiences of participants with TBI in this study, given their complaints about the lack of follow-up after discharge from residential services. This area requires further research, given its impact on clients’ perceptions of receiving the right service at the right time. Other dimensions which impacted upon their perceptions included being allocated appropriate funding, the appropriateness of service timing, and the provision of ongoing services. Each
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of these factors has also been identified as problematic in international studies of systems of care following TBI (Barnes et al., 2005; Foster, Fleming, Tilse, & Rosenman, 2000;
LeFebvre et al., 2005; Sample & Darragh, 1998; Sample, Tomter, & Johns, 2007).
When participants in this study did not access what they thought was the right service at the right time, it was often due to a mismatch between the expectations of the person with TBI, their significant other and the service provider. These mismatched expectations form the fifth theme to arise from participant interviews.
8.3.6 Theme 5: Mismatched Expectations
Overview of Theme 5
THEME 5 - Mismatched expectations: It wasn’t what I thought it should be
Dimension 1: Expectations of services provided - Element 1: Distance required to travel to access services - Element 2: Expectation that services be provided if needed - Element 3: Reasonable length of stay when accessing services Dimension 2: Expectations for control over treatment decisions and discharge Dimension 3: Expectations of staff specialty Dimension 4: Expectations upon community integration
According to Van den Broek (2005), the main reason rehabilitation following TBI fails is because of a mismatch between the needs and wishes of consumers and the services clinicians are willing or able to provide. Although it is acknowledged that clinicians are the experts at assessing the impairments of adults with TBI and thereby their needs for services, what clients need may not necessarily be what they want. Nevertheless, if the clinician continues to address issues and push for change when there is a mismatch, the result will likely be frustration for both parties in a period of false compliance before the client eventually reasserts his/her wishes and abandons the service (van den Broek, 2005).
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The proposed solution to this mismatch in service provision is that clinicians adopt a more client-centred approach to treatment. Using this approach, the importance of facilitating clients’ capacity to identify their own problems, develop their own goals, consider their own options and make their own choices, is encouraged. According to Van den Broek (2005), success in rehabilitation is dependent on the ability of clinicians to effectively harness clients’ intrinsic motivation to change.
The fifth and final theme identified in this research was the mismatch participants identified between the expectations of service providers and consumers. This mismatch occurred on several levels. These levels became the dimensions within the theme and included mismatches in service provision, treatment decisions and discharge, staff specialty and expectations of recovery on returning home.
8.3.6.1 Dimension 1: Expectations of Services Provided
The first dimension of this theme related to the mismatches in expectations which occurred between consumers and service providers at the level of service provision. These mismatches included varying perceptions of what might be considered a reasonable distance to travel to access services, the requirement to provide a service if one is needed, as well as reasonable expectations of length of stay when a service is accessed.
ELEMENT 1: DISTANCE REQUIRED TO TRAVEL TO ACCESS SERVICES
The first of the three elements of this dimension related to the differing expectations of healthcare providers and people with TBI regarding acceptable distances to travel to access services. As a significant other (Paul) reported:
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If you go to the doctors in a particular town, nine times out of ten you’ll get referred to another regional centre. It’s further for me to travel, but they don’t use doctors in this regional area. Probably if I had a GP in this regional area, then everything would have been through this regional area.
The requirement of healthcare consumers to travel to access health services, and the subsequent social and financial hardships consumers face as a result of this travel, has been well researched (Foster et al., 2004; Fyffe, 1996; Humphreys & Weidand, 1991). Travel to access services was an accepted reality for most participants in this study. However, incongruent sentiments were noted between participants regarding their expectation for the provision of specialist services in the town in which they lived. For example, Melinda
(PWTBI) reports: You can expect that [to travel] because you can’t have brain surgery specialised person down in the suburb where you live or in the town where you live.
Timothy (PWTBI), however, had the opposite expectation:
So they wanted us to get something [services] locally and we were seeing a rehab specialist in a state capital but he was aged care. This states capital is not set up for it, full stop. They don’t have a head injury unit. For a state capital, that has what, a population of 300,000 or 400,000 or something and they don’t have a brain injury unit. I just find that really hard to believe. I reckon it's ignorance or arrogance or whatever you like to call it.
The need to travel for services in some cases was seen as a deterrent to access. For example, Justin (PWTBI) reported it was recommended that he receive physiotherapy services. However, he refused because accessing these services meant a 3-hour round trip:
They did suggest physio services. I think there may have been a rumour going through the physio department at the Melbourne Hospital. I wanted physio in Melbourne like a hole in the head. I didn’t have any wish to travel to get physio. I wasn’t responsive to that one.
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ELEMENT 2: EXPECTATION THAT SERVICES BE PROVIDED IF NEEDED
Regardless of the need to travel for services, all participants agreed upon the expectation of a service to be provided if needed, whether for themselves or their family.
For example, Melinda (PWTBI) states:
The biggest disappointment of it was, I don’t expect the government to look after me10. But if I work hard in a country and I pay big taxes, I have a few expectations … not for me, but for my family. For the children.
Justin (PWTBI) echoes this disappointment in the lack of services:
There was no one. There was total dearth. It may have been possible that I could have needed services and then I wonder what would have happened. The system certainly wasn’t geared up for doing anything useful.
ELEMENT 3: REASONABLE LENGTH OF STAY WHEN ACCESSING SERVICES.
When services were provided, some adults with TBI and their significant others reported incongruence between their expectations of the service and service providers’ expectations regarding the length of time they should remain engaged in the continuum of care. For example, Vera (PWTBI) reports:
When they did release me [from acute care], they sent me in an ambulance to a rehabilitation place in a regional area and I went there. I said I don’t want to go to rehab, I want to go home. I had kids who were two and four years old who, until they removed the last tube, wouldn’t come near me. It was pretty traumatic for them and my husband. I thought, I just want to go home. “No, no, you need rehab”. So off they sent me to this place.
Daniel (PWTBI) also reported his frustration upon being kept in a service longer than he thought necessary. However, he saw upon reflection that the service might have been right in extending his length of stay:
10 Melinda migrated to Australia and married an Australian. Her children were born and live in Australia. 364
I found it frustrating. Only in the sense that I thought I was a lot further along in my recovery than what they with their years of experience thought, and thinking back on it, I can see what they were seeing.
Oscar and Derek (PWTBI) had similar frustrations concerning the length of their inpatient rehabilitation stays. For example, Oscar reports:
I was fed up with the situation. I thought I was perfectly capable of looking after myself at home and the advice of the medical team was that I wasn’t ready to go home, but all I wanted to do was get back to my job.
Derek echoes these feelings when he reports: I think they wanted to keep me there but I wanted to go home.
8.3.6.2 Dimension 2: Control Over Treatment Decisions
The second dimension of the theme mismatched expectations reflected differing expectations in treatment between those with TBI and their treating health professionals.
Once again, these problems stemmed from a mismatch in the consumers’ needs and wishes and the treating clinicians’ ability and willingness to provide the desired treatments (van den Broek, 2005). The majority of these disagreements centred on the use of medication in treating secondary impairments arising from participants’ TBI. For example, Trish
(PWTBI) reports:
She [GP] just doesn’t want to put me on medication. She just wants me to read books and see if I can do it that way. I’ve tried to make it so clear to her that I just cannot. You know, I’m supposed to do all these relaxation techniques but I can’t control my breathing enough to be able to do them. That’s why I’m supposed to be on the medication. You know she wants me to do it this particular way and I just can’t do it that way.
Derek (PWTBI), however, disagreed with prescribed medication. Unlike Trish, he felt the medication recommended was not required. He says:
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I’m not taking their medication. They want me to take it but I definitely don’t agree with them. They gave me a lot of medication, but there’s a lot of side effects to it that I’m not keen about. You put on a lot of weight.
Justin (PWTBI) reports a similar difficulty:
I had a running battle with all the nurses as to whether they should give me medication for high blood pressure. I kept insisting no and they kept insisting yes. I think they finally gave me something one night and I almost flipped out.
Gentleman (2001) stated that if treatment decisions were based on the principles of adult education, mismatches in treatment expectations (such as the appropriate use of medication) would not exist. Based on these principles, rehabilitation should not be something that one “does” to someone to make them better, but rather it should be a process in which the affected person must engage and ideally help steer (Gentleman, 2001).
Therefore, medication should not be simply prescribed with compliance assumed.
Prescription should involve joint decision making between the consumer and the treating clinician.
Apart from varying expectations around the use of medication, participants also reported either receiving what they thought were excessive treatments or at times missing out on services they thought were necessary. The following account by Justin (PWTBI) demonstrates this issue:
There was a really weird decision that the specialist in the acute hospital made after my neck brace came off. They decided I should be checked for osteoporosis. I think that they were surprised at the amount of damage I’d suffered. Whereas I think that they should have been surprised at how I’d survived instead. I think they looked at the opposite side of the spectrum there. Anyway, I went along to someone who decided my bone density was a little lower than normal. Which was not surprising considering that I hadn’t done any physical exercise at all for about 20 weeks and hadn’t been exposed to much Vitamin D and things like that. Anyway, they popped me onto a course of treatment which I took for a few weeks and then I discontinued it because I wasn’t happy about it. I went back and
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they redid the bone densities and decided that I was just on the cusp of normal. And so I said … “I don’t believe I have osteoporosis”. I thought it was a very strange decision to adopt from the hospital.
Other variations in expectations of care are evident in Liza’s (mother of PWTBI) sentiments about age-appropriate therapy activities her son Joel was engaged in:
She had him stacking blocks one on top of the other. It was just awful and they were baby blocks. I’m thinking “Surely there must be better equipment for an adult male, get something more appropriate”.
Nellie’s (mother of PWTBI) comments on the level of care her son, David, received in the acute stage showed that there was mismatch between her and the service provider’s expectations regarding appropriate levels of supervision once David was medically stable:
In my eyes, I just felt he didn’t get the same level of care on the ward that he was getting in ICU. They sort of left him there. There wasn’t anyone there with him all the time. He was thrashing around a bit. That worried me.
8.3.6.3 Dimension 3: Expectations of Staff Specialty
Consumers’ concerns regarding staff specialty, expertise and competence was another area that reflected a mismatch in consumer expectations with those of service providers. Participants’ concerns were primarily reported when adults with TBI and their significant others moved from specialist acute or inpatient rehabilitative settings to outpatient services. For example, Bernice (wife of PWTBI) reported:
When Timothy came home, there was quite a period of time where we had no services. Local clinicians provided some service but they [the psychologist and the physiotherapists] weren’t trained in head injury. The physiotherapists were giving him heat packs. Before he left Melbourne he was doing everything. They were just pushing his body to the limit because they knew he’s just got all the injuries on one side so he favours the other. Locally, he wasn’t pushed so all the scar tissue has built up. He probably wouldn’t have had as much scar tissue and that if they’d kept working it. I think if we were closer to Melbourne, he would have had a better outcome because they just know. As soon as you talk to one of them, straight away, they know exactly what you’re talking about. All
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these other local services just have no idea what was involved with a head injury, from the doctor, to the psychologist and the physiotherapist.
More specifically, participants with TBI reported wanting to be referred to services with trained professionals who could treat secondary TBI impairments while providing information on possible prognosis. Melinda (PWTBI) reflects this when she states:
These people [local health professionals providing outpatient rehab services], they weren’t trained how to help people recover from brain surgery, they had no idea. I was speaking with them. I was trying to find out, what was the expectation for my recovery. Am I okay? Is it alright to be like that? You know, they said “I’m sorry we can’t help you with that, you have to go back to the Melbourne hospital” but I can’t go there without a referral.
Karen (mother of PWTBI) reported similar frustrations to Melinda when reflecting on the services provided in her local area. She states:
The case manager that we've got here is … I just don’t think she’s experienced enough, you know. After having a specialist case manager in Melbourne, I just don’t think she’s that experienced in brain injury. When we first got her, I felt that she just didn’t understand, that she couldn’t see, that there was anything wrong with Katrina.
TBI healthcare consumers are not the only ones concerned about the lack of knowledge of TBI in treating clinicians. Many health professionals acknowledge that they know too little about the problems of people with TBI to be confident treating them
(Gentleman, 2001). Health professionals themselves have identified their need for help and support when treating adults with TBI. One proposal for providing this extra support and training is that of a “virtual team”. This team would be underpinned by telemedicine and computer-based learning. The use of a virtual team to help clinicians manage clients’ specialised conditions was being trialled in Scotland (Gentleman, 2001). The outcomes of
TBI clients managed by this team are currently unknown.
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Aside from their frustrations regarding the lack of their treating clinicians’ knowledge, participants reported being frustrated by other characteristics exhibited by their clinicians. Pauline’s (PWTBI) frustrations were not a result of the lack of specialty of local services, but a result of receiving services from people she perceived to be young and inexperienced. For example, Pauline (PWTBI) reports:
I think it was just that both those two girls, the occupational therapist and the speech therapist, were a bit young. The speech therapist particularly, she just took no notice of who I was as a person. I remember the occupational therapist was a bit young and inexperienced too.
The expectation among participants that specialist services should be provided is not unique to this study. A practice review of TBI rehabilitation in New Zealand in 2004 reported similar results (New Zealand Guidelines Group & Accident Compensation
Corporation, 2004). This study found that 76% of respondents with TBI favoured having access to one or two specialist centres for treating severe TBI over accessing local services.
Participants with TBI in this study felt that they were more likely to receive expert care, less fragmentation, and would know where to go for help if more specialist services were received. Interestingly, health professionals surveyed in this study reported the opposite perception, that services should be based in clients’ own homes and communities where family can be involved in each stage of their care (New Zealand Guidelines Group &
Accident Compensation Corporation, 2004). The perceptions of Australian TBI clinicians regarding the provision of specialist services to people with severe TBI are currently unknown.
According to clinical care guidelines, the provision of specialist services in the acute and inpatient stages of client care is encouraged. However, once adults with TBI are medically stable, rehabilitation which takes place in the person’s usual environment is
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encouraged (New Zealand Guidelines Group, 2006). Further research is required to examine the fit between consumers’ and health providers’ perceptions regarding their wishes to access and provide specialist services.
8.3.6.4 Dimension 4: Expectations Upon Community Integration
In addition to mismatches in expectations of service provision and treatment decisions, mismatched expectations were also reported when people with TBI and their significant others left formal hospital-based services and returned to their home communities. These mismatched expectations primarily concerned expectations of return to work. Martin (partner of PWTBI) reports that when Trish (PWTBI) returned home: They expected me to just go on out and find a job. I said to them “I can’t”, but they still made me apply for things. Bernice (wife of PWTBI) also describes unrealistic expectations when she reflects on the assumption placed upon Timothy by his GP that he would return to work following his head injury:
He [GP] thinks Timothy should be back fully at work. He just doesn’t understand why he is not working. He can’t see anything physically wrong so he seems to think that Timothy should be back at work.
The management of adults with TBI once they return to the community is problematic. Following discharge from residential rehabilitation services, adults with TBI are often referred to their local GP for long-term monitoring (Khan et al., 2003). As in the case of Timothy and Trish, the GP may have little knowledge of the TBI. According to
Khan (2003), GPs play a major role in referral generation, information distribution and counselling once people with TBI return to their communities. To combat the problems of long-term mismanagement of adults with TBI, the NSW Motor Accident Authority devised
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“clinical practice guidelines for the care of people living with TBI in the community”, to assist GPs to manage the unique needs of people with TBI (Trevena et al., 2004).
In addition to reporting limited support from their GPs, participants believed that unrealistic expectations placed upon them resulted from community members not understanding the nature of TBI. As Timothy (PWTBI) reports:
Somebody said to me brain injury is the worst injury that you can have. Why? Because people can look in your eyes and not see anything wrong with you and that’s where your brain is isn’t it, it is behind your eyes? They can see you’ve got a broken arm and they feel sorry for you. You’ve got a cut on your finger or you’ve got a sore leg and of course everybody feels sorry for you. Nobody feels sorry for anybody with a brain injury because they don’t understand the complexities of what that poor bastard is enduring.
Alongside the expectation from the community that people with TBI should return to normal, people with TBI also had expectations, realistic or not, regarding the caring role of their family once they returned home. This expectation was made evident in the stories of two participants in this study who did not receive family support. Bettina (PWTBI) reports:
The Avon lady called the Monday after I got home and she brought a casserole, which was lovely. She was the only person that did anything like that. I came home on the Friday, and one of Peter’s [Bettina’s partner] daughters came up on the Saturday and stayed Saturday night. I was sort of a disappointed in that I wound up having to cook tea and everything and that was it. There was no other assistance from the family in any way. I’ve only got my sister up in Queensland, and she annoyed me a bit. I mean if the shoe had been on the other foot, I would have been up there.
Pauline (PWTBI) had similar expectations regarding the caring role her niece should have played but did not, when Pauline was discharged from hospital. Pauline’s niece was living with her at the time. Pauline reports:
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Once I did ask Sophie to do some shopping for me and I came home once and she had brought the washing in and folded it all up. But, you know, she did nothing else to help. Not once did she help. I was a bit let down by that. You don’t expect family to treat you like that. I thought “I’m twice her age and I’ve been in hospital for 6 weeks recovering from a head injury, and she just left everything”.
8.3.6.5 Summary
The theme mismatched expectations encompassed several dimensions. These dimensions included mismatched expectations of services provided, degree of control over treatment decisions and discharge timing, in staff specificity and expectations on community integration. These mismatches were typically variations between the expectations of service providers and consumers. Mismatched expectations often resulted in consumers voicing frustration with services which often resulted in disengagement.
The first dimension of mismatched expectations related to issues of service provision. This dimension consisted of a number of elements, the first of which was need to travel to access services. Overall, participants in this study reported they were happy to travel to services if they perceived the service was specialist. Studies show that clinicians’ perceptions regarding the need for specialist service do not align with those of consumers
(New Zealand Guidelines Group & Accident Compensation Corporation, 2004). According to a New Zealand study, clinicians would rather refer TBI consumers to local services to alleviate the perceived burden of travel than request that they travel to a specialty service
(New Zealand Guidelines Group & Accident Compensation Corporation, 2004), whereas, as in this study, TBI consumers reported they would rather travel to access specialty services. To reduce these ineffective service referrals, overt conversations need to occur between clinicians and consumers regarding which service would best meet consumers’ perceived needs.
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The second element relating to mismatched service provision was that participants believed a service should be provided if it was needed. Participants felt that services should be appropriately timed to meet their needs, thereby ensuring their greatest possible recovery or continued adaptation. Although it is an understandable perception, research conducted by Foster and Tilse (2003) investigating clinicians’ post-acute referral patterns suggest that participants’ needs for services were not the only consideration clinicians thought about when deciding whether to refer an adult with TBI for future services. Other factors, including the healthcare environment and organisational context, are considered. According to that research, clinicians reported the need to balance their roles of consumer advocate and gatekeeper of resources.
The final element of mismatched expectations in service provision related to the incongruence between consumers’ and service providers’ expectations regarding the length of time adults with TBI should remain engaged in services. Where possible, service providers are encouraged to provide services according to best practice. In doing this, they are said to facilitate the best possible outcomes for their clients (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003). Clinical care guidelines stipulate that rehabilitation should start as soon as possible and continue for as long as necessary (British Society of Rehabilitation Medicine & Royal College of Physicians,
2003; New Zealand Guidelines Group, 2006). Best practice indicates that the recovery curve after TBI is steepest in the first 3 months (Gentleman, 2001). Therefore, clinicians see an obvious advantage in starting residential rehabilitation early to maximise client gains.
Clinical care guidelines also recommend that rehabilitation should continue in non- residential settings once clients are discharged home, to facilitate continued recovery
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(British Society of Rehabilitation Medicine & Royal College of Physicians, 2003; New
Zealand Guidelines Group, 2006). In an era of evidence-based practice, clinicians may at times overlook clients’ preferences under the reasoning that they are the experts trained in assessing clients’ deficits and thereby ascertaining their needs (van den Broek, 2005).
However, as occurred for some participants in this study, situations may arise whereby what clinicians feel a client needs may not be what the client actually wants. Therefore, a period of false compliance with rehabilitation may be engaged in before people with TBI eventually abandon services.
The findings from the first dimension, reflecting mismatched expectations of services provided, demonstrate the importance of client-centred rehabilitation. In this form of practice, the interests of the consumer are of central concern. Using this model, clinicians pay attention to what clients are saying, both directly and indirectly, about their needs and wishes. While clinicians continue to play the role of expert, they complement this role with that of listener, taking on board the expression of wants of their client and where possible making the concerns of the client central to rehabilitation, rather than those of other interested parties (e.g., funding bodies, health service managers).
The implementation of client-centred practice would also help resolve problems discussed under the second dimension of mismatched expectations. This dimension reflects disagreement between service providers and consumers regarding control over treatment decisions and discharge. This dimension encompassed differing expectations regarding the use of medication to treat secondary impairments and the appropriateness of therapy activities in reaching age appropriate goals.
The third dimension, expectations of staff specialty, reflected participants’ concerns regarding treating health professionals’ degree of specialty, experience and knowledge. As
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stated earlier, participants preferred when possible to access the services of a specialist. The wish of consumers to access specialty services is not unique to this study. Other studies of both TBI consumer and service providers’ perceptions identified that whereas consumers valued the services provided by specialists, which they perceived to be less fragmented, healthcare providers preferred consumers to access locally based services (LeFebvre et al.,
2005; New Zealand Guidelines Group & Accident Compensation Corporation, 2004).
The referral preferences of healthcare providers in Australia for specialist versus local services are currently unknown. Further research is required in this area. However, discussion between consumers and healthcare providers is necessary when referrals are made following discharge from residential services. The preferences of both parties should be considered and a joint decision should be reached regarding service appropriateness.
The final dimension within this theme, expectations upon community integration, reflected the mismatch of perceptions of adults with TBI, their GPs, the community and specific family members, regarding the need to return to normal. These mixed perceptions related to participants’ suitability for re-employment and the expectation that they would return to their normal life roles once discharged from hospital. Participants in this study felt that these mismatched expectations arose because few people understood the impairments adults with TBI face.
The theme mismatched expectations and its subsequent dimensions provide important insights which need to be considered by health professionals when planning services with people with TBI. Overt discussions throughout the continuum of care are needed to ensure there is a match between the expectations of the consumers and the characteristics of the services provided. Once this occurs, the continuum of care engaged in by adults with TBI may be considered client-centred.
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8.4 Conclusion
This chapter has presented the themes uncovered in the Stage 2 of this research.
These themes help to answer the eighth research question examined in this thesis: What factors affected the ability of people with TBI and their significant others to access services following head injury? As discussed in this chapter, these factors include acceptance and readiness, support, advocacy, the right service at the right time, and mismatched expectations. The dimensions and elements within these themes have been discussed. The following chapter revisits these themes. However, rather than presenting the themes in a linear order (as was done here to aid clarity), they are discussed through the telling of four participant stories. These stories will help to demonstrate the interaction and fluidity of themes with the passage of time.
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CHAPTER 9
STAGE 2: INTERACTION OF THEMES ACROSS TIME
9.1 Introduction
Chapter 8 presented and discussed the five themes which arose from the second stage of this research. These themes were acceptance and readiness, advocacy, support, the right service at the right time and mismatched expectations. As was seen in Chapter 8, the interaction of these themes at various points in time either supported or impeded the ability of participants with TBI to access services. For example, the degree to which adults with
TBI accept their TBI and are ready to engage with therapy affects the degree to which they engage with offered services. This was demonstrated by Bernice (partner of PWTBI), who reflects:
We were quite quick in implementing them [strategies] and Timothy responding to it. But then he wanted to change. He knew that there were problems there. He didn’t like how he was progressing. So he wanted to change and I think that’s probably the key to it.
In this excerpt, Bernice reflected on Timothy’s readiness to engage with the anger management strategies recommended to him by his psychologist. Timothy had been living at home for 2 years following his TBI before he was able to recognise that his anger was a problem. While he was an inpatient, clinicians had attempted to engage Timothy to work on his anger. However, at that time he did not see that he had the problem. Once he recognised the difficulty he had controlling his anger, he was motivated to implement the strategies recommended. Once he accepted his impairment he became ready to access services.
In this chapter, the healthcare journeys of four participants are told to help illustrate the way the themes, from this point referred to as person-related factors, change over time,
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influencing the participants’ ability and willingness to access services. The five themes are retitled in this chapter to signify how they can change over time. These factors either facilitate or impede access to services. In Chapter 8 the five factors were introduced in a linear order to aid discussion. In this chapter, however, it is made clear that the five factors are not linear; they are fluid and change through time.
The four participants’ healthcare journeys, affected by person-related factors, are visually represented in a model which maps access to services in comparison to the phases of rehabilitation recommended in clinical care guidelines (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; New Zealand Guidelines Group, 2006).
This model is introduced in Section 9.2. Once the four participant journeys have been reviewed, visually mapped and discussed, the impact of time on chronic illness, particularly
TBI, and on participants’ abilities to access care, is discussed.
9.2 Model of Stages of Rehabilitation
Figure 9.1 revisits the model depicting stages of rehabilitation presented in Chapter
3. It provides a useful illustration of participants’ needs for different services at different stages throughout their healthcare journey. Each stage of this journey should be entered into with seamless continuity. Each stage of this model has been previously discussed (see
Section 3.2.2) and therefore is not revisited here. However, it is important to note this model is based on the stages of rehabilitation recommended in clinical care guidelines
(British Society of Rehabilitation Medicine & Royal College of Physicians, 2003; New
Zealand Guidelines Group, 2006).
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Figure 9.1 Model of Stages of Rehabilitation
Residential Specialist Non-residential Longer Term Acute Care Rehabilitation Community Based Community Support Rehabilitation
Note. Adapted from: Turner-Stokes, L. (2001). Head injury rehabilitation – How should it be provided? Head Injury Rehabilitation – A Parliamentary Select Committee.
In Chapter 8, five person-related factors were discussed: acceptance and readiness,
support, advocacy, right service at the right time and mismatched expectations. It is the aim
of this chapter to demonstrate the fluid role these person-related factors play in influencing
access to care within the context of time. The stories of four participants are told,
illustrating the fluidity and interaction of factors over time in influencing participant access
to services.
Figure 9.1 is used in this chapter to demonstrate the fluidity and interaction of the
five person-related factors through time, facilitating and impeding access to services. Each
of these factors is represented by a coloured line (see key in Figure 9.3). Each stage of
rehabilitation depicts a different stage or time frame in a participant’s healthcare journey.
Person related factors are depicted above or below the stages in the rehabilitation model,
demonstrating their role at that time as facilitators or impediments of access to care (see
Figure 9.2). The fluctuations in person-related factors affecting access to care are evident in
the four journeys presented in Section 9.4.
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Figure 9.2 Model of Stages of Rehabilitation with Personal Factors Intertwined
Facilitates access
Acute Care Residential Specialist Non-residential Longer Term Rehabilitation Community-Based Community Support Rehabilitation
Impedes access
Note. Purple line depicts the change in the degree of acceptance of impairments and readiness for therapy of an adult with TBI. In this figure the adult’s level of acceptance and readiness initially acted to impede access to services. However as the degree of acceptance and readiness increased this factor acted as an facilitator to service access.
9.3 Method
The data on which these journeys are based were gathered in the Stage 2 of this
research (see Chapter 4, Section 4.4.2). As the aim of this chapter is to illustrate the
interaction of person-related factors over time, only 4 of the 16 participant healthcare
journeys are reviewed. Each participant’s journey reflects a different continuum of care.
The journeys retold in this chapter are made up of participant quotes linked by
summaries of what was reported in the interviews. As much as possible, participant quotes
are used to recount their journeys in order to remain true to their experiences.
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9.3.1 Participants
The participants with TBI whose stories are reviewed in this chapter are Bettina,
Melinda, Oscar and Daniel. To maintain the anonymity of the participants, all names, rehabilitation hospitals and places of residence are pseudonyms. Brief biographical sketches of the participants are presented here. The four participants had important differences which were initially thought to have affected the services they received (i.e., they lived in different locations and were allocated different funding models to cover the costs associated with their treatment). They also represent a range of continuum of care experiences (See Table 9.1).
Table 9.1 Review of Participants Discussed in Chapter 9
Participant Funding ARIA Services accessed throughout TBI continuum of care model rating of Acute Inpt Outpt Monitoring home town
Bettina Public Highly Yes No Yes No accessible Melinda Public Highly Yes Yes Yes Yes accessible Oscar Private Highly Yes Yes Yes No accessible Daniel Compensa Highly Yes Yes Yes Yes ble accessible
Note: Inpt = inpatient rehabilitation; Outpt = outpatient rehabilitation.
9.3.1.1 Bettina
Bettina was born overseas. She moved to Australia with her daughter when she married her first husband more than 30 years ago. This relationship has since broken down.
Bettina holds a postgraduate degree in psychology and worked as a lecturer at an institute of higher education before sustaining her TBI 5 years ago.
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Nine years ago, Bettina’s mother died. Ten weeks after that her daughter, Sharyn, committed suicide. In between her mother and daughter dying, Bettina was hospitalised for neck surgery and suffered a mild stroke. Bettina has a history of depression. Bettina’s current partner, Phillip, has children and grandchildren from a previous marriage, who do not speak to Bettina.
Bettina and Phillip are currently self-employed. They work as stall holders selling leatherwork, dolls and collectables, while travelling between local markets. They also conduct paper runs. Bettina lives in an inner regional centre and accessed health services following her TBI as a public patient.
9.3.1.2 Melinda
Melinda emigrated from Eastern Europe when she married her first husband. She had a daughter during this marriage who until recently lived at home with her and her current husband, Drew, and their two other children. Melinda’s daughter, aged 18, has just moved to a metropolitan centre to study medicine. Melinda feels her daughter’s wish to pursue medicine is a direct result of the experiences Melinda had following her TBI.
Melinda was 37 years old at the time of the interview and is a trained accountant.
However, she stopped working following an unsuccessful return to work program implemented 6 years ago. Melinda is now a stay-at-home mother and housekeeper. Melinda married her second husband, Drew, soon after she sustained her TBI. Melinda reports that the marriage is strong. She states she was lucky to have an intelligent husband who was able to support her and her family following her TBI.
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Melinda lives in an outer suburb of a metropolitan centre. She accessed mainly public health services following her TBI. However, she also reported paying privately for specialist TBI services.
9.3.1.3 Oscar
Oscar sustained his TBI 3 years ago when he was assaulted following a night out in a metropolitan centre with his friends. Before sustaining his TBI, Oscar worked as a senior project manager in a national company. He resigned from this role following an unsuccessful return to work program. Oscar is currently employed as a website project officer within a charity organisation.
Oscar completed an undergraduate degree in information technology and telecommunications. Oscar has a supportive family and partner. He was 28 years old when he was interviewed.
Oscar lives in a metropolitan centre. He accessed private and public health services following his TBI. Oscar had private health insurance and received a lump sum payout from the Victims of Crime Tribunal to help fund his care.
9.3.1.4 Daniel
Daniel sustained his TBI 5 years ago in a motor bike accident on a private property.
At the time of his accident, he was employed as a senior research fellow within a university. Following a successful return to work transition plan, Daniel is still employed as a senior academic within the same university. Daniel is married and has two sons.
Daniel lives in a metropolitan centre. He accessed private health services following his TBI. Daniel was allocated compensable funding to pay for his care.
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9.4 Exemplar Stories
An analysis of the variation of person-related factors (i.e., acceptance and readiness, support, advocacy, right service at the right time and mismatched expectations) over time, facilitating and impeding access to the different stages of rehabilitation, is now provided. Initially, each of the four participants’ journeys is presented. The five person- related factors are then drawn from their journeys and mapped according to the stages of rehabilitation model presented in Figure 9.1. In this way the interaction of factors determining access to services across time is demonstrated.
9.4.1 Bettina’s journey
It was a Saturday night in July, when Bettina leaned over her second floor balcony to inspect the curtains her partner Phillip had just hung, when she fell.
I ran straight out, because I was hanging the curtains and Bettina was outside. The next minute I saw her go over the balcony and I went to grab her but missed. I just flew down [the] stairs and virtually saw that she was alive. I got on the phone because the neighbours were home and they’re nurses (Phillip, partner of PWTBI).
Bettina’s neighbours worked for 40 minutes to resuscitate her while they waited for an ambulance to arrive. Bettina was flown to a metropolitan acute specialist hospital for her acute care. She remained there for approximately 20 days before returning home. Phillip commuted daily from the rural centre within which he lived to the metropolitan centre to visit Bettina while she was in hospital. Phillip reported receiving no accommodation or travel support during this time. However, he reported that he needed to return home daily to feed the animals and work.
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I’d leave down there after tea, come home, look after our animals, go to bed, get up, do our two mail runs, and then go straight down. It took 3 hours to get there depending on the traffic. It’s close to 200 kilometres (Phillip, partner of PWTBI).
Bettina remembered receiving quit smoking brochures during her acute stay.
However, neither Phillip nor Bettina remembered receiving any information regarding her
TBI and the symptoms that were to follow.
I wish someone had told me in the hospital. Probably the only regret or criticism I’ve got of the hospital is that I wish someone had sat down and explained to me the frustration and rage that I would feel about not being able to cope, because my tempers are terrible. It’s nothing for me to throw half a dozen glasses across the room (Bettina, PWTBI).
Bettina reported she received mainly surgical care while at the acute metropolitan hospital (i.e., facial surgery to fix bone fractures) and Bettina and Phillip reported receiving little support once Bettina was discharged home. It was all of a sudden like you’re on your own. Not just on your own but out the back of nowhere. No one cares, you’re gone (Bettina,
PWTBI).
Bettina thought her GP was responsible for managing her care once she was discharged from the acute hospital. However, Bettina reported that her GP’s attitude, competence and poor knowledge of TBI did not help her recovery. The local doctor, he’s bloody hopeless. He should be banned. He won’t listen. His attitude right from day one was
[that] you were a drunk (Phillip, partner of PWTBI). Bettina now avoids going to see her
GP.
He’s there for the money. The amount of times Bettina would go, “I’ve got to get another prescription, I wonder if he’s away and I can get someone else”. I keep saying to her, “Go to someone else”, but you know there’s not many doctors [in the country] (Phillip, partner of PWTBI).
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Bettina reported receiving 3 to 4 months of outpatient services following a referral by Centrelink to the Commonwealth Rehabilitation Service for return to work services. She stated that this period of rehabilitation was extremely beneficial.
I was eligible for rehab and a girl, Michelle, over at [name of regional centre] treated me. She was brilliant because she picked up there was a major problem with my hand. She organised for me to see a surgeon about it. She was really good. She set goals with me (Bettina, PWTBI).
The only other outpatient service Bettina reported receiving was psychology.
Bettina was assessed by a psychiatrist, but felt he had been unfairly biased as a result of a referral letter sent by her GP.
So I went over and saw this chap in [name of regional centre] and I don’t know what was in the referral letter because all we did was sit and talk. He didn’t do any tests. I’ve done a degree. My first degree was in psychology, so I know he didn’t do any tests. [He was asking] probing questions, but it wasn’t test type questions. He said, “yes, you’ve definitely got brain damage but it’s not from the accident, it’s from the alcohol” (Bettina, PWTBI).
Eight months after Bettina’s accident, Phillip and Bettina’s relationship broke down and Phillip left. Phillip reported receiving no formal support services or counselling to help him understand what Bettina was experiencing. He stated that had he received these services, he might have been more supportive. If they’d have said, “look you’re going to have problems”, then we both would have been prepared for it. We wouldn’t have gone off the handle and said, “well stuff you”. (Phillip, partner of PWTBI)
Not long after Phillip left, Bettina met another man who had also sustained a TBI.
She reported that the time she spent in this new relationship helped her to gain insight into her own behaviour.
Thirteen months after Phillip had left I started seeing a man who also had a brain injury. He was in the army and he’d had a major accident. I think the funny part about it was, the thing we most had in common is my face. It is constantly numb and it drives me mad. Like, if it’s a windy day, I’ll go mad,
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if I get a piece of hair on my face, I start dry retching. Apparently it’ll always be like that and he knew exactly how that felt because he had the same problem. But he would get into, oh God, his rages were worse than mine. He was drinking a hell of a lot more. That was a pretty big wakeup [call] because I’d sort of look at him and think, “is that what I was doing to Phillip?” (Bettina, PWTBI)
Bettina’s relationship with this second man broke down and in time Bettina and
Phillip’s relationship was renewed. When reflecting on the experiences they had following
Bettina’s TBI, Phillip reported:
In the hospital, the care couldn’t have been better, but the information that they pass over to you in there and afterwards was just non-existent. Virtually, when Bettina left the hospital, the care was virtually non-existent. But if they had’ve been able to give us a list of services, it may have saved us a lot of drama and hassle and heartache (Phillip, partner of PWTBI).
Bettina added to this saying:
I’ve probably fallen between the boards, haven’t I? I wasn’t TAC, I wasn’t Workers Comp, I wasn’t any of those. So I just fell through the gaps. There weren’t dollars there. So I’m cynical, if there’s no dollars, people don’t worry (Bettina, PWTBI).
9.4.1.1 Interpreting Bettina’s Journey in Light of the Interaction of Person Related factors
Figure 9.3 reflects the impact of the five person-related factors on Bettina’s healthcare journey. As can be seen, only twice were the factors support, the right service at the right time and matched expectations in place to enable Bettina to effectively access services. This occurred in the acute phase of Bettina’s care when she was admitted to a specialist acute metropolitan hospital. At this time she had strong support from her partner
Phillip who travelled to be with her daily, the service she needed (i.e., acute care) was available, and given how impaired she was, she expected to receive the service and was therefore motivated to accept it.
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Figure 9.3 Bettina’s Ability to Access Services
Facilitates Access
Acute Care Residential Non-residential Long Term Rehabilitation Outpatient Monitoring Services Rehabilitation Services
Impedes Access
Note: Personal factors – Acceptance and readiness, Support, Advocacy, Right service at the right time, and Mismatched expectation
The second instance in which person-related factors aligned to enable service was
when Bettina received outpatient rehabilitation services through the Commonwealth
Rehabilitation Service. Her access to this service is depicted by person-related factors once
again rising above the stages of rehabilitation model, indicating facilitated access. As can
be seen in this instance, a service was available that met Bettina’s needs and expectations
and therefore she accessed it.
As can be seen in Figure 9.3, person-related factors facilitating and impeding
Bettina’s access to services were fluid, changing over time. For example, Bettina’s
acceptance of her TBI and readiness to engage with services increased slowly over time.
This factor therefore changed from impeding access to facilitating it.
As Bettina related, in her story she did not know at the time of her injury that she
had sustained anything more than physical injuries. Therefore, she was unable to accept her
head injury, given her lack of awareness. Bettina did talk, however, about a growing
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awareness and acceptance of the cognitive sequelae of her TBI (e.g., her uncontrollable rage) when she spent time with another person who also had a TBI. This is depicted in
Figure 9.3, as the personal factor acceptance and readiness slowly rises from impeding to facilitating access to services.
Initially, the factor right service at the right time also played the role of a facilitator
(i.e., Bettina received acute care services when she was medically unwell). At this time
Bettina and her family expected and advocated (i.e., rang an ambulance) for acute services and they were received. However, once Bettina was discharged from acute care, she was not referred for further services. Nor did she perceive a need for them. Therefore, the factor right service at the right time no longer facilitated her access.
Finally, the right service at the right time re-emerged as an facilitator when Bettina was referred to Commonwealth Rehabilitation Service by Centrelink for vocational rehabilitation. At this stage, Bettina felt she needed the service and the service provided at this time met her needs.
Like the factor the right service at the right time, Bettina’s access to support initially acted as a facilitator but changed to impedance when Phillip and Bettina’s relationship broke down. Phillip reported leaving Bettina as he did not understand her TBI and the cognitive and behavioural sequelae she suffered (i.e., memory lapses, bouts of rage and frustration). He reported that had he been given information about Bettina’s TBI and had supports available to him, he would have been better able to cope when she was discharged home.
Taking into account that Phillip and Bettina’s relationship broke down and that she was unaware she had a TBI, it is little surprise that the factor advocacy did not ever facilitate Bettina’s access to services. A small rise in advocacy efforts is noted in Figure 9.3
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when Bettina approached her GP to request access to counselling services. However, this attempt to self-advocate in order to obtain services was not successful and was not repeated.
From Bettina’s story, it is evident that the services she received following her TBI were affected by the degree of her acceptance of her TBI and therefore her readiness to engage in therapy, the support she received, and her ability to access the right service, which matched her expectations, at the right time. Given Bettina’s poor level of awareness of her TBI, the lack of information she received, and her limited access to advocacy, it is not surprising that she accessed only acute care and time limited outpatient services.
9.4.2 Melinda’s Journey
Melinda sustained her head injury one morning after collapsing in her daughter’s room at home. Her husband, Drew, found her and immediately rang an ambulance.
It happened on the 26th of July at 7 o’clock in the morning. I don’t remember anything. I remember the night before. I had a huge argument with my ex-husband and I went to bed crying, that was the way I fell asleep. I woke up in the hospital 2 weeks later (Melinda, PWTBI).
Melinda was taken from her home to the closest regional hospital via ambulance. At this hospital, Melinda reported her husband had to strongly advocate for her to be seen by a doctor. Melinda reported that she felt she would have died at the regional hospital if not for her husband’s constant pushing.
My husband was especially forceful with doctors. He told them, “Look, she was pulling her hair out when she fainted. She’s got something wrong with her head”. They were keeping me in intensive care in the emergency department waiting for a doctor to come and see me. They had no idea what was wrong with me. They didn’t even go and find out. So my body started to shut down bit by bit. By that time my husband just pulled them and shook them up, “Hey, she is dying”. So I could have died if my
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husband didn’t push the staff hard enough. I would have died in [name of the regional] hospital (Melinda, PWTBI).
Melinda was airlifted to a metropolitan specialist acute hospital following an MRI scan at the regional hospital which revealed blood clots in her brain. She stayed at the metropolitan hospital for approximately 3 weeks. During this time, she had neurosurgery and spent a period of time in a coma.
I don’t remember the time I was recovering in the coma. My family said it was a huge shock for them to see me acting like a little girl. I started withdrawing. I did not recognise them. I did not recognise my children. They were very hurt. The biggest mistake was that nobody could explain to the children why mummy was like that (Melinda, PWTBI).
Melinda reported she received medical, allied health and psychology services while at the metropolitan specialist acute hospital. She stated she was happy with the medical care she received while she was there, but one big issue she identified was the lack of information given to her by some medical staff.
One day, I said to one of the surgeons “Who did the surgery?” I wanted to speak with one of them. I wanted information. I wanted explanation. I felt like I was dying. I needed somebody to tell me what had happened to me. I went to the bathroom, there was no mirror, I couldn’t see myself. I put my hands on my head and I was half shaved. I could feel the stitches and I thought, “What has happened to me?” I had no proper explanation of what had happened to me. I didn’t know why I was there. What had happened? Who brought me there? I needed an explanation (Melinda, PWTBI).
Melinda was transferred from the metropolitan specialist acute hospital to a metropolitan public medical centre for inpatient rehabilitation. I escaped rehab on the 19th of August. I was in rehabilitation for 3 days. Melinda reported staying in residential rehabilitation for 3 days before discharging herself. Melinda reported that she was never told the reasons why she needed to receive rehabilitation and as she was placed in a ward with people she perceived to have intellectual impairments, she felt she did not belong.
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If they explained to me the real purpose of rehabilitation and didn’t treat me like a mental person, I would have stayed longer. I told the doctor on Sunday night, I told him, “If you don’t discharge me and let me go home to rest home properly, then I will leave. I’ve got a family who can take me to the rehab to be treated or trained”. I remember on the Sunday I left. My husband came in and I said “You take me home or I will call a taxi” and I walked out. I couldn’t stand it. I absolutely could not stand it (Melinda, PWTBI).
Melinda reported that she received limited allied health services while in residential rehabilitation. However, she qualified this by reasoning that she did not have insight into her difficulties at that point, so she did not understand or comply with needed therapy.
I had a physiotherapist who was trying to teach me to walk straight and I remember I was very disappointed. At that time I was freshly hurt and not accepting what had happened to me. They ask me, I’ll never forget, I had a huge white line in front of me and the physio asked me, “Can you walk this white line?” and I said to him, “What do you think I’m a drunk person, I can’t walk straight?” He said, “No, just for your balance” (Melinda, PWTBI).
Melinda said that while she was in residential rehabilitation she felt she needed to rest in order to recover. She felt that she was unable to do that in a busy, noisy hospital.
Therefore she left. Once Melinda discharged herself from rehabilitation, she and her husband went away for 4 days. During this time, Melinda stated she slept constantly.
Melinda reported that her husband kept in contact with the rehabilitation hospital at that time so that they could continue to monitor her recovery.
My husband had to give up his work to look after me. I had to stay with my brother and my sister in law for 1 month after rehab. My sister in law stayed with me constantly. She looked after me and bathed me. I could dress properly. But there always had to be somebody there to hold my hand and talk to me (Melinda, PWTBI).
After a period of time, Melinda started to access public health services as an outpatient. However, she reported that the staff employed within this service were not specialists in TBI. Therefore, the therapy she received there was not always helpful.
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They put me in a public rehab stream which was very cheap. Not just cheap but not well trained people. The staff weren’t trained how to help people recovering from brain surgery. They had no idea. I was speaking with them. I was trying to find out what their expectation was. “Am I okay? Is it alright to be like that?” They replied “I’m sorry we can‘t help you with that, you have to go back to the [name of specialist acute metropolitan hospital]”. But I can’t go there without a referral so I had to go back to my GP, tell the story to him and then he told me that I had to organise that myself. So they were of no help (Melinda, PWTBI).
Melinda reported that she constantly had to push her GP for referrals to access counselling services, to have repeat MRI scans and to access follow-up neurosurgery reviews, all of which she had to self-fund. I didn’t have private insurance but I paid privately. I paid the full charge for the MRI tests. I paid the full charge for the brain surgeon. I paid full price for a psychologist to see me (Melinda, PWTBI).
Melinda also reported that little support or information about her TBI was provided to her husband and children. Luckily, I’ve got an intelligent husband. He dealt with my TBI.
But he also had to work because I couldn’t work. He had to work to support us so it was very hard. Melinda reported that her family received no form of accommodation or travel support throughout her continuum of care. She stated that she did not even know support was available.
9.4.2.1 Interpreting Melinda’s Journey in Light of the Interaction of Person Related factors
Figure 9.4 reflects the impact of the five person-related factors on Melinda’s healthcare journey following her TBI. As can be seen, services were available and family support remained constant throughout the entirety of Melinda’s healthcare journey.
Specialist services were provided by the metropolitan specialist acute hospital and residential rehabilitation was then available through a public medical centre. Non- residential, outpatient services were then provided by Melinda’s local public health centre,
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and ongoing monitoring was available through yearly outpatient neurosurgery reviews at
her metropolitan specialist acute hospital.
Figure 9.4 Melinda’s Ability to Access Services
Facilitates Access
Acute Care Residential Non-residential Long Term Rehabilitation Outpatient Monitoring Rehabilitation
Impedes Access
Note: Personal factors – Acceptance and readiness, Support, Advocacy, Right service at the right time, and Mismatched expectations
Melinda reported varied access to services due to reported problems with lack of
insight delaying her readiness for services. Melinda reported she was not ready for services
until after she had returned home and developed an understanding of what had happened to
her. This was the reason Melinda gave when explaining why she needed to leave inpatient
rehabilitation.
I didn’t know what had happened to me. One day I was perfect, the next day I was a half vegetable. I needed to go home, to see that everything was okay. Then I would be right to go back to rehab. I needed to understand what happened to me. Then I was ready to go back and get better (Melinda, PWTBI).
Mismatched expectations also resulted in disrupted continuity between stages in
Melinda’s healthcare journey. She expected that the rehabilitation services provided to her
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would be specialist. In reality, this was not the case. Mismatched expectations were evident in her annoyance with the outpatient services provided to her by the local public health centre, which she described as cheap with not well trained people. At this time Melinda had accepted her injury, was ready for services and had strong family support. This meant that the facilitators (i.e., acceptance and readiness and support) outweighed the impediments
(mismatched expectations) and thus Melinda continued to access the service even though it did not meet her expectations.
Melinda’s story shows the dynamic and complex relationship between person- related factors which appear to play a role in determining consumers’ access to services regardless of service availability following TBI.
9.4.3 Oscar’s Journey
Like Melinda, Oscar had services continually available to him. He also had constant support and continuing advocacy. His journey is as follows. Oscar sustained his TBI after being assaulted one Saturday night in May, 2005.
It was around about 4:00am. Some people saw me on the sidewalk bleeding badly from the face and initially they thought I was just drunk but then upon inspection, they found out no, I had been assaulted. So an ambulance was called and I was taken to the [name of metropolitan specialist acute] hospital. I obviously don’t know all the details. I just remember waking up. The doctors said that 95% of people would have died as a result of the injuries that I sustained. Your body goes into flight or fight mode, and fortunately my body went into fight mode (Oscar, PWTBI).
Oscar was initially treated on the scene by paramedic staff before being transferred to a metropolitan specialist trauma centre for his acute care. Oscar reported he could not remember much of his time in the acute hospital. He remembered receiving adequate
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medical care and he mentioned he had two friends who were ICU doctors, who where able to look out for him and see that he got the care he needed.
I come from a reasonably privileged background and one of my best friend’s brother is a doctor at the [name of metropolitan specialist acute hospital] in ICU and his fiancée works in ICU. Because I have friends in the medical profession, they’re going to ask for updates and check how I’m going (Oscar, PWTBI).
Oscar reported staying in acute care for somewhere between 4 to 7 days before being transferred to a metropolitan private hospital for specialist neuro-rehabilitative care.
Oscar remained at this hospital for approximately 4 weeks before self-discharging.
My frustration grew over time because I didn’t want to be there. I wanted to be doing my job, living at home, doing my own thing. I was in a situation where my career was going very, very well and all of that independence had been stripped away. Being locked down in the room, in the ward and having an orderly follow me around for up to a month because I couldn’t pass the post-traumatic amnesia memory test was extremely frustrating (Oscar, PWTBI).
Oscar reported he self-discharged because at that time he was fed up with the hospital and perfectly capable of looking after himself.
Oscar remembered receiving allied health services while in rehabilitation, including physiotherapy, speech therapy, social work and one consultation with an occupational therapist.
Physio I had to have numerous times a week. Once again, it was very frustrating. Having been a regular gym attendee, I liked running on the treadmill, doing you know an average of 12km per hour. But I was told I’m only allowed to do 5km per hour and walk. Also, being very coordinated, having been a windsurfer and having state titles to my name and losing my balancing skills was pretty hard. But I’m pretty persistent so I just stick at it until I get on top again (Oscar, PWTBI).
Oscar also reported that he received neuropsychology services and adequate medical care. I did a lot of neuropsychology and my building a rapport with my
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neuropsychologist was key. I had faith in her and I trusted her and that was a key factor. I knew that I could fall back on that.
Once discharged, Oscar returned to his parents’ home for a period of time before returning to his flat. Oscar reported this was a difficult time for him as he once again felt as if he had lost his independence.
I had to move back in with my parents. There were a couple of issues there in that as I was a victim of crime. I’d been assaulted. I was pretty nervous about going back to my apartment, and not being able to drive as well, was a big factor. So yeah, that independence was all stripped away (Oscar, PWTBI).
Oscar received outpatient services through a public medical centre and the
Commonwealth Rehabilitation Service. The services he received included case management, return to work services, a driving assessment, ongoing allied health services including physiotherapy and neuropsychology, and ongoing specialist medical care. Oscar reported that the length, intensity and duration of these services varied throughout his recovery, according to his need.
Oscar stated that his original return to work plan was unsuccessful.
I wanted to go back to work and they wouldn’t let me back to work for 3 months. I think my first week back was a 6 hour week, doing 2 or 3 hours a day. I was in a national role at the time as a project manager with a high level of degree and responsibility, so you can imagine that I couldn’t fulfil my duties. Eventually I had to resign but with the support of my managers and the organisation. I was liaising with senior management there and they were very supportive. But being highly successful in business and being 25 at the time, and having to resign I guess led to post-traumatic depression because in my situation, my job was a very large part of my identity (Oscar, PWTBI).
Oscar reported he no longer received regular services or ongoing monitoring.
However, he stated that he has built a relationship with all of his therapists and therefore believes it would not be hard to re-engage with services if needed.
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I usually find a way of getting around the system. Which is probably cocky and arrogant but I’m able to do that… I have always had somebody to fall back on but that’s because of the relationships that I’ve made with those people, not because the processes exist. I often get my way, but that’s through a lot of persistence and a lot of battling red tape and administration (Oscar, PWTBI).
Oscar received compensation through a lump sum payout through the Victims of
Crime Tribunal. Oscar believes this lump sum does not reflect his loss of earnings nor ongoing medical costs.
I had lost well over $100,000, in earnings. I got awarded the maximum amount which was only around $20,000 so I lost a heap of earnings. I got the maximum lump sum possible and it didn’t even cover anything and certainly no emotional compensation or punitive compensation of any sort (Oscar, PWTBI).
Oscar believes that general funding for head injuries is inequitable.
Perhaps with the Victims of Crime money may have covered the hospital charges and I know the compensable people, which most of the people were, would have been awarded ten times the amount that I got from Victims of Crime. So it’s quite inequitable (Oscar, PWTBI).
Apart from funding impacting on Oscar’s continuum of care, Oscar also reported:
Had my parents not been there, I would have been a lot worse off. I mean I had my room at my house and they fed me, etc. If I hadn’t had that I don’t know how I would have recovered. Well, it certainly would have been harder (Oscar, PWTBI).
9.4.3.1 Interpreting Oscar’s Journey in Light of the Interaction of Person Related factors
Figure 9.5 reflects the impact of the five person-related factors on Oscar’s healthcare journey. As can be seen in this figure, the factors support, advocacy and the right service at the right time remained constant through Oscar’s continuum of care. The factors which changed, resulting in varied care, were Oscar’s insight affecting his acceptance and readiness for services, and his expectations compared to those of his service providers about the characteristics of services provided.
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Figure 9.5 Oscar’s Ability to Access Services
Facilitates Access
Acute Care Residential Non-residential Long Term Rehabilitation Outpatient Monitoring Rehabilitation
Impedes Access
Note: Personal factors – Acceptance and readiness, Support, Advocacy, Right service at the right time, and Mismatched expectations
The purple line depicted in Figure 9.5 reflects how Oscar’s level of acceptance and
readiness changed through time. Oscar reported that he did not develop a proper
understanding of his TBI and his changed capacity until after he left residential
rehabilitation. Therefore, his willingness to truly engage with services, depicted by the
raised purple line, was not evident until he began to access non-residential outpatient
services.
Given Oscar’s limited acceptance of his injuries in the acute and residential
rehabilitation stages of his care, it is not surprising that his expectations for service (as
depicted by the red line in Figure 9.5) was mismatched with the expectations of those
providing his service. This mismatch in expectations, alongside Oscar’s impaired insight,
meant that Oscar engaged in a period of false compliance with therapy while in inpatient
rehabilitation before he eventually abandoned the service.
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Regardless of this fact, Oscar’s family’s constant support and advocacy (see the pink and green lines in Figure 9.5) meant that even though he disengaged from care in a residential setting, they were able to advocate for home-based TBI services following his discharge. Thus, even though Oscar needed time to accept his TBI and become ready to access services, he still received continued care in line with clinical care guidelines.
9.4.4 Daniel’s Journey
Daniel’s journey also reflects a continuum of care in which access to services was in line with clinical care guidelines. Daniel sustained a TBI in April, 2003 after a motor bike accident on a friend’s farm. Daniel was unable to recall what caused his accident. However, his friends and family reportedly found him unconscious with the motor bike on top of him.
He was not wearing a helmet at the time of his accident.
I decided to take my boys out for a very gentle joy ride. Well, not a joy ride, but just a little ride without a helmet and that was fine, no dramas. Then I went off on my own and obviously went a bit too quick. They found me with the bike on top of me, unconscious (Daniel, PWTBI).
Daniel’s family called an ambulance and Daniel was taken to the local regional hospital, where a helicopter met him and he was flown to a metropolitan specialist hospital for acute care. Daniel remained at this hospital for just over a week. He spent 5 days of this time in a coma.
Daniel was transferred to a metropolitan specialist private rehabilitation hospital for residential rehabilitation.
After I had come out of intensive care at the [acute hospital], I was transferred to the [rehabilitation hospital] in their acquired brain injury unit. I was extremely fortunate in the end as [compensable fund] picked up the healthcare costs. All my rehab, my medical costs, immediately after the injury and then the ongoing rehab costs were picked up by [compensable fund] (Daniel, PWTBI).
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Daniel stayed in inpatient rehabilitation for approximately 2 months before being discharged home and receiving outpatient services through the same centre. Daniel reported that the time he spent in rehabilitation was very beneficial. Their professionalism, their concern, the whole thing was just superb. He reported receiving allied health services, including physiotherapy, occupational therapy, speech pathology, dietetics and social work, as well as psychology services and weekly medical reviews.
When Daniel was discharged from inpatient rehabilitation he continued to return to the same hospital for outpatient therapy: That certainly helped, the elements of the same team were available to me when I became an outpatient. Daniel continued to return to the rehabilitation hospital for another 3 to 4 months before engaging in a transitional return to work program.
I found that very frustrating, in that I just wanted to get back to work. But Pam, who was my occupational therapist, she was very ordered in my transition. She said “Let’s take it one step at a time”. First of all she came with me to work just to check it out and see what the situation was and she arranged to have regular feedback with my boss. They discussed, “How is he going? How is he different?” Those sorts of things. Returning to work was a very gradual process (Daniel, PWTBI).
Daniel reported he initially received outpatient case management services through the occupational therapy department at the residential rehabilitation hospital. After he was discharged, a compensable body provided this service. He also stated that as an outpatient he completed a driving assessment, received occupational and physiotherapy services, attended a life skills psychology group, and initially received medical monitoring every 6 months. Daniel reported that he was extremely happy with the outpatient services he received. He reported that it was easy to make the inpatient to outpatient transition as he knew the staff, particularly the women at reception.
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I knew that the ladies at the desk who organised the taxis and stuff … Knowing the ladies on the desk was very helpful. So it was a good to continue between inpatient and outpatient, it was very comforting (Daniel, PWTBI).
Daniel reported some difficulty transitioning from hospital to home. He reported that he had some minor behavioural difficulties that needed to be addressed. Daniel reported that his family found this time difficult. However, he was able to contact his outpatient psychologist at the time, who provided a home visit to offer further information and counselling as needed. Daniel reported that the services he required were available.
However, he stated that he needed to ask for them in order for them to begin.
They are available, if you need them. They do not say up front that you will have to come in every 2 months and tell them how things are going. But you just know that there is a support network there and you know you have got access to it should you need it. I think that is how it works, because they are busy people juggling their inpatients and their outpatients, who are coming in for continuing rehab, without having to worry about you. That is not to say that they do not care, but you need to make the first approach (Daniel, PWTBI).
9.4.4.1 Interpreting Daniel’s Journey in Light of the Interaction of Person Related factors
Figure 9.6 reflects the impact of the five person-related factors on Daniel’s healthcare journey. Throughout his continuum of care Daniel reported adequate access to specialist services in each stage.
I was pretty, very happy. I mean I’ve only got the [private specialist hospital] rehab people to compare with. I have not had more than one brain injury. However, the whole thing was just superb (Daniel, PWTBI).
He also reported he had health professionals who advocated for services on his behalf. For example, Daniel reported:
When I was an inpatient it [the advocate] would have been [name of rehabilitation consultant]. He was guiding my care. As an outpatient I imagine it would have been him as well, or the rehabilitation team. They
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were interfacing with my GP. The rehab team were driving the whole recovery process (Daniel, PWTBI).
Moreover, throughout Daniel’s journey the support offered to him by his family
remained constant. The only thing that appeared to waver was his and his service provider’s
varying views about the rate of his recovery and readiness to move to the next stage of the
continuum of care. An example of this was when Daniel reported:
I found it frustrating only in the sense that I thought I was a lot further along in my recovery than what they, with their years of experience, thought. Thinking back on it, I can see what they were seeing (Daniel, PWTBI).
Daniel reported that this mismatch in expectations related to differing perceptions
with regard to the rate of his recovery during his inpatient stay as well as during his return
to work.
Figure 9.6 Daniel’s Ability to Access Services
Facilitates Access
Acute Care Residential Non-residential Long Term Rehabilitation Outpatient Monitoring Rehabilitation
Impedes Access
Note: Personal factors – Acceptance and readiness, Support, Advocacy, Right service at the right time, and Mismatched expectations
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9.5 Discussion
Chapter 8 presented linear discussion of each personal factor impacting upon access to services following TBI. These factors included degree of acceptance of impairments and readiness to engage with therapy of an adult with TBI, their ability to access support, the presence of an advocate, whether the right service was accessed at the right time and whether the services accessed matched the expectations of the person accessing it. This chapter adds to understanding of the influence of these factors on rehabilitation for participants with TBI by reflecting on how the factors change through time, acting as either a facilitator or impediment when adults with TBI attempt to access services.
The central concept of this chapter is the element of time, and how as a result of person-related factors changing through time, access to services can change. In the case of an adult with TBI, stakeholders (i.e., healthcare provider or consumer, participant with TBI or significant other) often have varying views on the importance of time and its applicability to services accessed. For example, healthcare providers often reflect on time as an important indicator for client outcome. Time post injury as viewed by clinicians is a prognostic indicator of severity of injury. Katz and Alexander’s (1994) study of outcomes based on length of coma for 199 people with TBI indicated that outcomes were progressively worse as the duration of an adult’s coma increased. Time post injury can also be viewed as an indicator for potential recovery. Mackay (1992) argued that the earlier an adult accesses rehabilitation following TBI, the greater the potential recovery.
Clinical care guidelines stipulate that timing is important to ensure a person’s ultimate recovery following TBI. They state that rehabilitation should start as soon as possible and continue for as long as necessary (British Society of Rehabilitation Medicine
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& Royal College of Physicians, 2003; New Zealand Guidelines Group, 2006). Early rehabilitation following TBI and readmission to rehabilitation has been shown to be beneficial for physical improvement and return of self-care skills (Tuel et al., 1992), for preventing secondary complications and for facilitating overall recovery (Mackay et al.,
1992). Gentleman (2001) stated that recovery following TBI is greatest in the first 3 months following injury. Therefore, clinicians see an obvious advantage in working with adults with TBI during this period, rather than trying to “catch up” later.
Nevertheless, as highlighted by participants’ accounts in this study, consideration of the theoretical recovery curve following TBI (Gentleman, 2001) and a wish to maximise a person’s recovery during periods of increased neuroplasticity should not be the only considerations clinicians reflect upon when deciding when clients should receive services.
Personal related factors which involve the consideration of time, such as their degree of acceptance or awareness of their TBI and readiness to engage in therapy, are also important.
According to Fleming, Strong and Ashton (1998), deficits in self-awareness and denial of acquired impairments can seriously interfere with participation in rehabilitation by adults with TBI. Deficits in self-awareness have been reported to cause problems with engagement in therapy tasks, compliance with suggested behavioural changes, and uptake and use of compensatory strategies. Adults with impaired awareness are often poorly motivated to comply with therapies to address deficits that they do not recognise or believe exist (Shereer et al., 1998). Therefore, regardless of clinicians’ wishes to maximise client gains during periods of increased neuroplasticity, people with TBI may not yet be in a place where they are mentally ready to engage with therapy.
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The level of self-awareness in people with TBI is not constant; it is shown to develop over time following TBI (Fleming et al., 1998). If lack of awareness of deficits persists despite interventions designed to facilitate its development (e.g., video feedback, education regarding deficits, reality testing through engagement in real life activities), it may be necessary to cease formal rehabilitation, with appropriate supports in place for a period of time, to avoid client frustrations with the rehabilitation process. If formal rehabilitation was to be ceased long term, monitoring would be essential to determine whether self-awareness developed at a later stage, and whether intervention was appropriate at this time.
The degree of self-awareness is one example of a personal factor which impacts upon the ability of an adult with TBI to engage in therapy. This factor can impact negatively on a person’s motivation to engage with therapy, affecting their likely outcome, regardless of health professionals’ desires to provide early rehabilitation as defined by best practice guidelines. Acceptance and readiness, along with the other person-related factors, support, advocacy, the right service at the right time and mismatched expectations, must be considered if available services are to be accessed.
Consideration of clinical and person-related factors in determining service allocation, while important, may also be compounded by non-client-related factors such as resource allocation. One common barrier is the absence of acute care and inpatient rehabilitation beds. This is a particular challenge for residential rehabilitation units given the low numbers of rehabilitation beds nationally and their slow turnover rate, particularly when catering for those with moderate to severe TBI (Gentleman, 2001).
Foster and Tilse (2003) reported that clinicians working under resource limitations often feel conflicted in their dual roles as gatekeepers of resources and client advocates. In
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a changing health care environment with growing cost considerations and scarce resources, significant ethical dilemmas are faced by clinicians when prioritising who should be referred for care (Foster et al., 2004).
As stated in Chapter 3, Section 3.2.3, Foster and Tilse (2003) developed a conceptual model to help explain patterns of TBI service referral following the acute care of adults with TBI. This model was further refined by Foster, Tilse and Fleming (2004) following interviews with 18 health professionals and observations of 10 team meetings.
From their research, Foster and colleagues identified that decisions regarding clients’ referrals for services were influenced primarily by health professionals’ selection and interpretation of client clinical and non-clinical factors. These factors included issues to do with the healthcare environment, organisational context, and health professionals’ perceptions of the individual with TBI. Although the importance of considering these factors prior to referrals being made is acknowledged, it is suggested that the consideration of these factors, alongside recommendations made in clinical care guidelines, is not enough. Without consideration of the person-related factors of adults with TBI and their significant others, a service which clinicians perceive as necessary may be allocated but not utilised. An additional component to the Foster et al. model is therefore proposed. This component, person-related factors in PWTBI (see Figure 9.7), emphasises the need for health professionals to consider degree of acceptance and readiness, support, advocacy, the right service at the right time and match in expectations of consumers prior to the generation of post-acute service referrals.
Without consideration of these factors, services allocated may not be utilised. For people with TBI and their families to be actively engaged in a service they first need to acknowledge their need for this service. Unless the person with TBI can identify that he or
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she has a head injury with secondary impairments that require therapy for improvement, referral for further therapy may be futile. The person may likely be not yet ready to accept the impairments and is therefore not ready for treatment. Therefore, service referrals generated at this time may not be engaged with.
In service allocation, clinicians’ consideration of the degree of support or advocacy available to clients with TBI and their families is also important. As was established earlier, formal services can at times disempower clients and their families (MacPhail, 1998;
Seligman, 1993; Stringer, 1999). Limited historic involvement in therapy goal setting and continuum of care planning can mean that adults with TBI become passive recipients of health services. Without a strong advocate or support person these clients may become “lost in the system”. Clinicians need to closely monitor clients with poor support networks and limited advocacy skills following their discharge from formal services, to assist them to access services when needed. If the provision of client monitoring following discharge is not within the scope of the service provided, clinicians need to refer these at risk clients to formal case management services.
When planning future services, clinicians also need to openly discuss with people with TBI and their family what their needs and expectations are of the services to be provided. In this way services referred to are more likely to match clients’ expectations and to be provided at a time when they are needed. Only after joint consideration of non- personal and personal related factors will appropriate service referrals be generated with a greater likelihood of being truly engaged with.
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Figure 9.7 Factors Which Health Professionals Need to Consider Before Service Referrals Are Made for Adults with TBI Adapted from Foster and Tisle 2003
Healthcare environment • Resource deficiencies across the continuum of care • Lack of rehabilitation services, including allied health in rural and remote areas • Lack of knowledge of resources by health professionals • Efficiency of resource use • Value for money
Organisational context • Multidisciplinary processes • Allied health contribution • Variability in practitioner involvement • Presence/absence of advocacy • Pressure on acute care and inpatient rehabilitation beds
Health professional’s perceptions of individual with TBI Interpretation Post-acute care referral • Functional status • Rate/extent of progress options • • Residential rehabilitation Tracheostomy status • Recovery potential • Non-residential • Time since injury • Safety/burden of care rehabilitation • Age • Potential for independence • Monitoring • Family • Capacity to cope • Place of residence • Personal factors • Indigenous status
Personal factors in PWTBI • Acceptance and readiness • Advocacy • Support • Matched expectations • Right service at the right time
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9.6 Conclusion
This chapter discussed the healthcare journeys of four participants to help illustrate the way in which the person related factors presented in Chapter 8 changed over time, influencing the participants’ willingness and ability to access services following TBI. This chapter demonstrated that what clinicians perceive to be appropriate referrals and available services are not enough to ensure clients’ access. Consideration is also essential of clients’ acceptance of their impairments, readiness to engage with services, access to support, ability to advocate, perception of accessing the right service at the right time, and the degree to which services match expectations. Nevertheless, when considering these factors, it is important to note that they are not static. They interact and are fluid over time and therefore need to be continually reviewed to ensure true engagement of clients, in this case adults with TBI and their significant others, with services.
The following chapters, Chapter 10 and 11, are the final chapters of this thesis. In these chapters, the findings of the two stages of this research are triangulated and discussed.
Directions for future research are proposed and concluding remarks made.
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CHAPTER 10
METASYNTHESIS OF RESULTS AND CONCLUSIONS
10.1 Introduction
In this chapter the findings from the two stages of the study, questionnaires and
interviews, are triangulated. These results are compared and major findings are discussed to
answer the eight research questions posed in Chapter 1. The clinical implications of these
findings, suggesting the need for consideration of consumer experiences in continuum of
care planning, are then discussed. Based on these findings, an adapted model to guide
service planning for adults with TBI is presented.
10.2 Metasynthesis of the Two Stages of the Study
The findings from each stage of this study have been discussed in light of the current
evidence base following their presentation in Chapters 5, 6, 7, 8 and 9 (see Table 10.1). It is
not the aim of this chapter to review each result already discussed. Only the major findings
from this study relating to each of the research questions are revisited and triangulated. First,
a comparison of the results of the questionnaires from the perspectives of adults with TBI
and their significant others is presented. These data are then triangulated with the results
from Stage 2 of the research (i.e., interviews).
As the aim of this chapter is to present a metasynthesis of the major findings from the study following data triangulation, discussion is not categorised under each of the eight research questions. Instead it is combined to address four questions derived from the eight listed in Table 10.1.
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Table 10.1 Research Questions Answered According to Chapter Presentation
Research Questions Data Triangulation Stage One Stage Two
What is the reported continuum of care experienced by Chapter 5 Chapters 8 & 9 adults withT TBI? What is the recollected impact of hometown location on Chapter 5 theh continuum of care experienced by adults with TBI?
What is the recollected impact of healthcare funding on Chapter 5 thei continuum of care experienced by adults with TBI?
Whats is the reported continuum of care recollected by Chapter 6 Chapters 8 & 9 significant others of adults with TBI?
What is the recollected impact of hometown location on Chapter 6 the continuum of care experienced by the significant othersc of people with TBI?
What are other reported factors that influence the Chapter 5 Chapters 8 & 9 continuumo of care experienced by adults with TBI and their significant others? m Do people with TBI and their significant others recollect Chapter 7 receivingb the same services when reflecting on the care they received following head injury?
Whati factors affected the ability of people with TBI and Chapter 6 Chapters 8 & 9 their significant others to access services following head injury?n
This combination reflects that the perspectives of participants with TBI and their
significant others are considered jointly. That is, the original research Questions 1, “What is
the reported continuum of care experienced by adults with TBI?” and 4, “What is the
reported continuum of care recollected by significant others of adults with TBI?” are
combined to form the question “What is the reported continuum of care experienced by
adults with TBI and their significant others?”
The four questions discussed in this chapter are:
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1. What is the reported continuum of care experienced by adults with TBI and their significant
others?
2. What is the recollected impact of hometown location on the continuum of care experienced
by adults with TBI and their significant others?
3. Does the funding allocated to pay for the healthcare costs of adults with TBI impact upon
their experience of their continuum of care?
4. What other factors influence the continuum of care experienced by adults with TBI and their
significant others?
10.2.1 What Is the Reported Continuum of Care Experienced by Adults with TBI and Their
Significant Others?
The major findings relating to reported experiences of care following TBI are
presented in three sections: access to stages of care, involvement in care and transition
planning.
10.2.1.1 Access to stages of care
Findings related to access to stages of care revealed a number of shared perceptions
among consumers (i.e., adults with TBI and significant others) regarding access to and
satisfaction with services. One of the most notable commonalities was the perceived
experience that access to services decreased following discharge from residential services.
This was reported regardless of the fact that clinical care guidelines stipulate the importance
of long-term support and monitoring following moderate to severe TBI (British Society of
Rehabilitation Medicine & Royal College of Physicians, 2003; New Zealand Guidelines
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Group, 2006). Half of the adults with TBI reported not having access to monitoring.
Similarly, two thirds of significant others reported not being able to access services for their
family member with a TBI following discharge from residential rehabilitation. It was not
surprising, then, that both adults with TBI and significant others identified the need for
follow-up once discharged from hospital, as the following excerpts from the open-ended
responses to questionnaire items show:
The follow-up is surely as important as the treatment to ascertain progress in the big wide world (102a, PWTBI).
I don’t think there was enough follow-up. One specific concern my husband had was never addressed. He gave up pursuing this and just lives with it (184b, PWTBI).
Regardless of the need expressed by both groups for ongoing monitoring, their
satisfaction with services remained high throughout the continuum of care: over 70% of
adults with TBI and significant others reported they were either okay, very happy or
extremely happy with the level of care they experienced in acute, inpatient and outpatient
rehabilitation settings. The only noted difference in the groups’ perceptions was found when
their degree of satisfaction with services received in an outpatient setting was compared.
The proportion of significant others who reported being extremely happy with outpatient
services was 18% less than that of participants with TBI (see Table 6.5).
It is thought that the decrease in significant others’ satisfaction at this stage of the continuum of care may be associated with the fact that the intensity of services reduces following discharge from residential services. This means that resources reduce at a time when much of the responsibility for supporting an adult with TBI is transferred from health services to significant others, who are then required to take on the role of carer (Knight et
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al., 1998; Sinnakaruppan & Williams, 2001). The impact upon significant others taking on
this role is reported to be life changing (Wells et al., 2005).
The first theme, acceptance and readiness, reflects the life-changing adaptation adults with TBI and their significant others go through following the onset of a TBI. Once participants in this study overcame the joy of having survived the initial injury they reported going through a process whereby they needed to recognise their impairments, adapt to their impairments (which often required a redefinition of sense of self) and engage in efforts to rehabilitate or help them cope with their impairments. The interview data in this study showed that this process was iterative and was experienced by both participants with TBI
and their significant others.
It is thought that the stage of acceptance and readiness that participants were in
reflected their satisfaction with services. For example, in acute care, where the degree of
participant satisfaction was the highest, participants were just grateful they had survived.
They did not recognise or accept the life-altering impairments they were yet to face.
Excerpts from responses to open ended quentions demonstrated these reasons for
participants’ satisfaction (e.g., They saved my life (6a, PWTBI); Without them I do not think
I would have survived (9a, PWTBI); They saved my daughter’s life (10b, significant other of
PWTBI)). However, as participants moved through their continuum of care, their satisfaction
with services dropped as their awareness of their secondary impairments and their
frustration with services being unable to cure them became evident (e.g., I needed
rehabilitation immediately after discharge instead of waiting 3 years for slow to recover
program; I may have been a lot better by now (52a, PWTBI). It took 3 weeks of phone calls
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to get help. I had to break down, crying over the phone, to get somewhere (107b, significant
other of PWTBI)).
The link between satisfaction with services and acceptance of injury were evident in
this study. This link should be considered by clinicians when providing services. The
process of acceptance and readiness may need to be explained to adults with TBI and their
families, so they do not perceive particular stages of rehabilitation as less effective than
others because of their improving insight and decreasing rate of spontaneous recovery.
10.2.1.2 Involvement in continuum of care
The comparison of responses from participants with TBI and significant others on
questions in Stage 1 targeting perceptions of involvement in guiding care identified worrying trends. Participants with TBI reported that the health professionals involved in providing their healthcare made the majority of decisions regarding their treatment. For example, 42% of participants with TBI reported that their therapists set their goals in inpatient rehabilitation and 56% reported that they were discharged from residential services when their therapist or doctor decided it was time for them to go. Limited perceived inclusion of significant others in care planning was also noted. For example, 59% of significant others reported they did not contribute in rehabilitation goal setting activities and
48% reported they were not invited to attend therapy sessions with their family member with
TBI.
Involvement of significant others in the rehabilitation of adults with TBI is
encouraged by clinical care guidelines, which advocate that a holistic view of people with
TBI and their carers be taken (New Zealand Guidelines Group, 2006). According to these
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guidelines significant others should be provided with support and relevant information, and should be fully involved in the development of their family member’s management plan.
From this study, it seems consumer involvement in guiding care is an area which requires further consideration by Victorian TBI services.
The disempowerment of adults with TBI and their significant others in residential care stages through restricting their involvement in goal setting and therapy opportunities is concerning. Disempowering consumers is of concern given that the best health outcomes have been shown to be achieved when consumers are empowered to take control of their own health (World Health Organisation, 1998). According to MacPhail (1998), when they are in the acute stage, ill people fall into the “patient” disempowered role, whereby health professionals make all their healthcare decisions. This role may be appropriate when a person is seriously ill, yet it is not appropriate in inpatient and outpatient rehabilitation settings where goals target gradual resumption of self-control (Newberry, 2001). Without a transition from the patient role to empowerment through involvement in decision making, participants’ feelings of lack of control may result in learned helplessness (Seligman, 1993).
Participants’ potential development of learned helplessness in residential settings is concerning given their need to advocate for services once discharged home. Advocacy was the third theme identified in Stage 2 of this research. It consists of two dimensions: the self as an advocate and external advocacy. Demonstration of the need for the self to act as an advocate once discharged from residential care services was evident both in excerpts from open ended responses to questionnaire items and in interview responses:
My outpatient rehabilitation was conducted in a public hospital with many patients, and while any concerns I raised were listened to and addressed, I often needed to push to meet my needs (58a, PWTBI).
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The care was okay but we had to organise most of it (184b, significant other of PWTBI).
This [access to services] came about by me. I basically did the deal myself. I got on the internet and looked up to see what was around. I found a website where they had a list of services around here, and I looked up the ones that were closest to home (David, PWTBI).
Similarly, the need for external advocacy was evident in the following:
They did a rather crap job and left things unfinished. My mother had to manage my case (61a, PWTBI).
We finally demanded, which we learnt to do, demand. My sister said you’ve got to start to demand things. Well, you realise no-one is going to offer (Liz, mother of PWTBI).
Another aspect requiring further consideration by Victorian TBI services is the provision of information. To successfully advocate for services it is essential to have adequate information (Knight et al., 1998). One quarter of significant others in this study reported having inadequate levels of information while their family member or friend was in the acute or residential phase of care. The perception of a lack of information provided throughout the continuum of care is one of the most frequently cited problems of healthcare in studies reflecting on the experiences of significant others (Fyffe, 1996; LeFebvre et al.,
2005; Murray et al., 2006; Sample & Darragh, 1998). It is not, however, a concern unique to significant others. Although not probed through direct questioning, participants with TBI perceived that the provision of more information was the most important improvement needed in the acute and inpatient stages of their care. Excerpts from participants with TBI and significant others in responses to open-ended questions pertaining to the need for information included:
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It would have been better if someone had taken the trouble (apart from my family) to explain to me what I had done to myself and the medical ramifications of this (40a, PWTBI).
There was a lack of information given to me about my condition. To be given any information, I had to ask questions. But being sat down and given information on side effects, the condition itself and why it happened would have been appreciated (70b, significant other of PWTBI).
10.2.1.3 Transition planning
Comparison of data reported in Stages 1 and 2 of this study relating to transition
planning reflected the need for overt forward care planning and the provision of support as
consumers move through continuum of care stages. In this study, transition planning
referred to consumers’ experiences as they moved from acute care to residential
rehabilitation, residential rehabilitation to non-residential services, and non-residential
services to long-term monitoring.
The results indicated that the majority of participants were aware of their discharge
date from residential rehabilitation, significant others were trained in how to care for the
participant with TBI in preparation for discharge and were given the contact details of the
residential services to call post-discharge if needed. Regardless of these steps, over 70% of
significant others reported feeling anxious about participant discharge. Similarly, over 40%
of participants with TBI reported being anxious and almost 30% reported feeling scared on
discharge.
Significant others in this study acknowledged that their anxiety and apprehension on
client discharge was probably normal (e.g., Our anxiety was part of the healing process
(102b, significant other of PWTBI)). However, they reported that the provision of support,
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information, appropriate service referrals and overt transition planning prior to, during and
after residential rehabilitation could help lessen their anxiety.
The involvement of consumers in transition planning is vital to ensure that the needs
of those for whom services are provided are met. The fourth theme from Stage 2, the right
service at the right time, reflects the need for consumers to receive what they perceive to be
the right service at an appropriate time to meet their needs through effective transition
planning. The dimensions within this theme include not only the provision of appropriately
timed services, but also the need for the provision of ongoing services and allocation of
appropriate funding to facilitate access to such services. In this study, consumers believed
that if services were appropriately timed, provided on an ongoing basis if needed, and
appropriately funded, the outcome of participants with TBI could have been improved. For
example, one significant other stated:
We’ve been waiting for a year and a half. We’ve been waiting for Katrina to go to transitional living care which has now come up, thank goodness. So for 5 years it’s sort of been waiting for the next step and the next step. If Katrina had been compensable, I think there would have been a lot of difference. She would have probably gone to a better rehabilitation centre where she would have had more intense rehabilitation. It also would have happened sooner (Karen, mother of PWTBI).
In answering the research question “What is the reported continuum of care experienced by adults with TBI and their significant others?”, the results of this study indicate that consumers reported adequate access to acute, residential and non-residential continuum of care stages. Yet very few reported being able to access monitoring or follow-
up once discharged. Consumers’ degree of happiness with services following TBI was high
in the acute and residential care stages but decreased markedly once they reflected on the
services they received in their home community.
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Consumers reported playing a limited role in guiding their care during the initial
stages. In these stages (acute and residential rehabilitation), it appears that treating health
professionals guided the care of adults with TBI. Yet consumers reported being required to coordinate their own care on discharge from residential services.
Consumers reported that adequate processes were in place to help them transition from hospital to home. However, although these processes existed, consumers continued to report high levels of anxiety and uncertainty about the future. The provision of extra support, information and additional services could go some way to alleviating this anxiety.
10.2.2 Does Hometown Location Influence the Continuum of Care Experienced by Adults
with TBI and Their Significant Others?
The second research question, relating to the perceived impact of location on the ability of consumers to access services was analysed according to the Accessibility and
Remoteness Index of Australia (ARIA). ARIA is a geographical methodology in which remoteness is judged according to the distances people need to travel to access goods and services (Australian Bureau of Statistics, 2001).
Over 90% of consumers reported that they needed to travel to what is classified by
ARIA as the most accessible service centre, highly accessible, to receive services. This finding may be expected when people with TBI are in the acute care stage of their health care journey, given the assertion by the ABS (2001) that the greatest access to specialist consultants and the most advanced medical procedures are located in larger centres with the greatest population base to support specialty fields. Nevertheless, this finding is concerning when, in non-residential stages of the continuum of care, almost 70% of participants with
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TBI reported the need to travel to another town to access services. This is a particular
concern given that drivers’ licences of adults with TBI are often temporarily suspended
following their injury.
Two dimensions within the theme, mismatched expectations, namely distance required to travel to access services and expectations of staff specialty, reflected the impact of location on service provision in Stage 2. The dimension, distance required to travel to access services, added to the findings from Stage 1 in that even though 70% of consumers
reported the need to travel to services, travel was an accepted reality. For example, one
participant reported: You can’t expect to have a brain surgery specialised person in the
suburb or town where you live (Melinda, PWTBI). Consumers also reported being happy to
travel to services if they perceived the service as specialist. In fact, the third dimension of
this theme related directly to consumers’ expectations of staff specialty. Consumers
regarded staff specialty, experience and knowledge to be of primary importance in
treatment. For example, one significant other stated:
As soon as you talk to one of them [specialist in TBI], straight away they know exactly what you’re talking about. All these other [local generic health] services just have no idea what was involved with a head injury (Bernice, partner of PWTBI).
TBI consumers’ preferences for specialist over local services in this study were
consistent with the findings of a New Zealand study investigating consumer and
rehabilitation providers’ preferences for TBI service provision (New Zealand Guidelines
Group & Accident Compensation Corporation, 2004). In that study, rehabilitation providers
disagreed with the idea of providing few specialist centres in preference for a greater
number of generic health services. Health providers supported their preference by asserting
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that access to specialist services was difficult for families in terms of travel and cost.
Consumers, however, held the opposite view. They felt that travel and cost-related factors
associated with accessing specialist services did not outweigh the perceived advantages
associated with better quality care (New Zealand Guidelines Group & Accident
Compensation Corporation, 2004). The findings of the research presented in this thesis align
with the preferences of those New Zealand consumers.
One of the main aims of conducting this research was to establish whether a relationship existed between perceived access to services following TBI and hometown location of both adults with TBI and their significant others. However, due to the inherent weaknesses of the use of ARIA as an index for remoteness (i.e., 81% of the Australian population is classified as living in the most accessible class) (Australian Institute of Health and Welfare, 2004), an uneven distribution of participants across the five ARIA categories
(i.e., highly accessible, accessible, moderately accessible, remote and very remote) meant that statistical comparison was inappropriate.
Nevertheless, the results of this study indicated that hometown location influenced the continuum of care experienced by consumers, in that the majority were required to travel to another town to access non-residential health services. However, the need to travel was expected by consumers in this study. Therefore, although it influenced the continuum of care they received, it was not a major concern. However, it should be noted that the state of
Victoria, from which the participants were drawn, has the second smallest geographical area
of Australia’s eight states and territories. The impact of rurality on consumers’ willingness
to access services needs to be further investigated in larger states with more sparse
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population bases before final comments about the impact of location on received services following TBI can be made.
10.2.3 Does the Funding Allocated to Pay for the Healthcare of Adults With TBI Impact on
Their Experience of Continuum of Care?
The third research question investigated concerned the impact of funding allocation on service provision as reported by participants with TBI and their significant others. Within this study, the relationships between allocated healthcare funding and cause of TBI, length of acute care stage, access to rehabilitation and reported access to case management services, were explored. Analysis of these data through cross tabulations indicated that relationships existed between funding and cause of TBI, ability to access rehabilitation and ability to access case management services. Typically, participants with TBI who were allocated compensable funding recollected the greatest access to services. This degree of access could be in part explained by the policies of providers. For example, the Transport
Accident Commission is committed to funding the reasonable care costs associated with impairments sustained as a result of either an accident in a Victorian registered car or on a
Victorian registered road (Traffic Accident Commission, 2003), whereas those with public funding, competing for service allocation with other conditions (e.g., people with cardiac conditions or diabetes) within a climate of fiscal constraint, reported the fewest opportunities to access services. The inequity of perceived access in this study which appears to be related to funding allocation is a matter of concern.
The impact of funding on perceived access to services was similarly reflected in
Stage 2 in the first dimension of the fourth theme, right service at the right time. In this
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dimension, participants reported that their eligibility for services, length of wait for services
and length of stay in services was dependent on the type and amount of funding they were
allocated to pay for their care. Participants reported that allocated funding affected their
access to services and ultimately their outcome following TBI. For example, one participant
reported: It would have taken longer to get through rehabilitation [without compensable
funding] so I reckon I’d be only half way to where I am now (Peter, PWTBI).
Therefore, in answer to the third research question, it appears that in Victoria the
funding allocated to people with TBI to pay for their health care affects their experiences of
their continuum of care.
10.2.4 What Other Factors Influence the Continuum of Care Experienced by Adults with
TBI and Their Significant Others?
The final research question aimed to uncover other factors which consumers felt influenced their continuum of care. The top five factors identified by both participants with
TBI and their significant others included the perceived quality of service received, the need for additional services, the need for more information, the need for earlier and more coordinated transition planning, and the need for support.
The need for support and empathy following TBI was repeatedly mentioned in both stages of this research by a large majority of participants in this study. Eighty one percent of participants with TBI reported that their family members were essential in providing them with support throughout their continuum of care. Participants reflected on the vital role family members played in their recovery on both emotional and physical levels (e.g., When
my family and friends came too visit me, it made me feel very happy (31a, PWTBI); My
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parents were my major carers in the hospital, they took me to the toilet, reminded staff to
replace my drip etc. (43a, PWTBI)). Not only did participants with TBI recognise the
important role family members played in providing this care, they also identified the need
for family members to be supported (e.g., Staff needed to spend time with my family to help
them understand who I now was rather than leaving them in a chair for hours (139,
PWTBI)).
The need for support for both the participants with TBI and their significant others
formed the second theme of the Stage 2. This theme, titled support, had three dimensions: the need for support, family as a source of support, and support upon return to the community. Consumers in this study reported the need for support to help them come to terms with the injury and the likely prognosis, as well as to help them physically after their
injury (e.g., assist with showering and meal preparation).
Formal financial supports, (i.e., carer allowances, accommodation and travel
subsidies) were accessed by few significant others in this study. Carer support services and
respite care were also accessed by few significant others (19% and 15% respectively). It is
unclear from this study whether the small numbers of carers accessing these services was a
reflection of limited need, limited awareness or limited availability of these services.
Comments in response to open-ended questions about needed support tended to suggest that
poor access to support services was not a reflection of limited need.
It would have been good to have someone to talk too about everything before and while my husband was at home. You feel a bit alone, not knowing what to expect one day to the next (70b, significant other of PWTBI).
I wish I still had [counselling/someone to talk to] you know, because it’s very difficult holding onto it all yourself. And it’s so confusing. There are so many things even now, 5 years later, so many things that are still related to her TBI. Things still have to be done and remembered and changed (Karen, mother of PWTBI).
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The need for financial, emotional and family support following TBI has been well
documented (Fyffe, 1996; Koskinen, 1998; LeFebvre et al., 2005; Murray et al., 2006;
Sample & Darragh, 1998). Research has indicated that the stress associated with TBI,
experienced by both people with the injury and their significant others, is ongoing and often
increases with time (Fyffe, 1996). The provision of social support has been shown to be a
moderator of this stress (Ergh et al., 2002). According to Ergh et al., presence of support showed a direct and linear relationship to family functioning. Clinical care guidelines articulate the need for early and ongoing support for both adults with TBI and their significant others in order to help prepare them to cope with the secondary impairments often sustained by people with TBI. Furthermore, support has been associated with a reduction in the psychological sequelae experienced by significant others of people with
TBI. Overall support results in better long-term outcomes for both adults with TBI and their families (New Zealand Guidelines Group, 2006).
10.2.1.5 Summary
The results of this research indicated that few participants with TBI experienced healthcare in line with international clinical care guidelines. Most participants recollected receiving residential services following TBI in line with international clinical care guidelines, yet their access to services declined after this point. Access to services was greatest among those allocated compensable funding. Access for consumers to monitoring , although known to be important following moderate to severe TBI, was experienced by relatively few.
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The need for advocacy identified by consumers following discharge of participants with TBI from residential services was reportedly essential to ensure access to required care.
Yet it can be argued that because they had limited involvement to that point in guiding their own care (e.g., involvement in goal setting and therapy, attendance at progress meetings, notification of discharge planning and receiving appropriate information), consumers were at risk of becoming disempowered and hence ineffective advocates. Overall, the results of this research indicate that current practice in Victoria may disempower consumers and allow learned helplessness, rather than encouraging their self-efficacy by involvement in care planning and maximising their independence.
International research and expert opinion suggest that funding, location and travel affect consumers’ abilities to access services (Gray, 2000; Murphy, 2004; Nabors et al.,
2002; Newberry, 2001; Sample & Darragh, 1998; Wilson et al., 2002). However, the impact of geographical isolation on access to services following TBI was downplayed by participants in this study. In fact, even though the majority of consumers reported the need to travel to access services, many stated that they were happy to travel if they perceived that the service was specialist and met their needs.
Aside from the impact of funding and location, an important factor ensuring participants’ recovery following TBI was the provision of continuing support. This support could be provided on a formal (e.g., counselling, financial aid) or informal (e.g., presence of family and/or friends) level but was needed in each stage of participants’ healthcare journeys. Important factors which determined participants’ willingness and ability to successfully engage with the services provided were the presence of support and advocacy, participants’ perceptions of accessing the right service at the right time, the degree of their
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acceptance of their impairments and readiness to engage in therapy, and the degree to which
the services provided matched their expectations.
10.3 Model for Planning TBI Service Provision Through Continuum of Care Stages
A persons’ degree of acceptance and readiness, ability to access support, willingness to advocate, and ability to access the right service at the right time which matches their expectation, change through time. All these factors are fluid and change alongside consumers’ motivation, either facilitating or impeding access to services. The variation in how these factors influence consumers’ access to services was demonstrated in Chapter 9.
Consideration of these factors alone, however, does not predict service allocation and consumers’ ultimate engagement. Foster and colleagues (Foster et al., 2000; Foster & Tilse,
2003; Foster et al., 2004) identified that health professionals’ interpretation of consumers’
clinical and non-clinical characteristics, alongside their consideration of contexts of care, are
predictive of service referral following acute care. The research of Foster and colleagues, when considered alongside the findings of this study, is helpful in determining the factors which impact upon TBI service provision and utlisation.
Following several studies (Foster et al., 2000; Foster & Tilse, 2003; Foster et al.,
2004), Foster et al. developed and refined a model predictive of TBI service referral following a person’s acute care. The development of this model was discussed in Chapter 3.
Using the findings from my research, I proposed that the model be further refined, adding consideration of consumers’ experiences and readiness to engage in further services as factors to consider when determining appropriate referrals. This proposal and the modified model were presented in Chapter 9, Section 9.5. For ease of access it is replicated in Figure
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10.1. I propose that this model be used by clinicians and consumers, alongside clinical care
guidelines, to help guide overt discussions of care planning following TBI.
Figure 10.1 Model for Planning TBI Service Provision Through Continuum of Care Stages
Healthcare environment • Resource deficiencies across the continuum of care • Lack of rehabilitation services, including allied health in rural and remote areas • Lack of knowledge of resources by health professionals • Efficiency of resource use • Value for money
Organisational context • Multidisciplinary processes • Allied health contribution • Variability in practitioner involvement • Presence/absence of advocacy • Pressure on acute care and inpatient rehabilitation beds
Health professional’s perceptions of individual with TBI Post acute care referral • Functional status Interpretation • Rate/extent of progress options • Tracheostomy status • Residential • Recovery potential • Time since injury rehabilitation • Safety/burden of care • Age • Non-residential • Potential for independence • Family rehabilitation • Capacity to cope • Place of residence • Monitoring • • Indigenous status Personal factors
Personal factors in PWTBI • Acceptance and readiness • Advocacy • Support • Matched expectations • Right service at the right time
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10.4 Research and Clinical Implications
The findings of this study have several implications for both future research and clinical practice. These implications relate to the various stakeholders considered in this research, including healthcare consumers (i.e., adults with TBI and their significant others), healthcare providers (e.g., department managers, nursing, medical and allied health professionals) and clinical care guideline formulators. The implications of this research for these stakeholders are outlined in Table 10.2.
Table 10.2 Research and Clinical Implications of This Study
Research and Clinical Implications Stakeholders
Consumers of TBI services in Victoria do not experience TBI advocacy groups, healthcare in line with clinical care guidelines. Advocacy consumers, healthcare for consumers and services need to be undertaken. professionals, health service managers and policymakers
There are inequities in consumers’ experiences of TBI TBI advocacy groups, service provision according to allocated healthcare funding. consumers, healthcare Advocacy for consumers and services need to be professionals, health service undertaken. managers and policymakers.
There is a need to ensure that healthcare professionals, Healthcare professionals, health students and graduates are aware of the importance of service managers and considering consumer preferences in service provision universities. throughout the continuum of care of adults with TBI.
There is a need for dialogue and debate on: Healthcare professionals, healthcare managers, and - the suitability of applying international TBI policymakers. guidelines to the Australian healthcare context - the levels of services and service provision that are acceptable minimum standards for adults and their families following moderate-severe TBI - how services are distributed and funded.
Table 10.2 cont.
Research and Clinical Implications Stakeholders
There is a need to investigate: Healthcare professionals, researchers and universities. - healthcare professionals’ experiences of TBI service provision in Victoria - actual patterns of service provision following TBI in the adult population - the impact of hometown location and distance on consumers’ experiences of their continuum of care in Australian states of greater geographical size.
There is a need for consumers, healthcare professionals, TBI advocacy groups, funding bodies and researchers to formulate Australian consumers, healthcare clinical care guidelines for service provision following TBI. professionals, health service managers, researchers and policymakers. There is a need for healthcare professionals to re-evaluate Healthcare professionals and policies related to TBI service provision, at a service level. healthcare managers.
There is a need to ensure that adults with TBI and their TBI advocacy groups, families are well supported throughout their healthcare consumers, healthcare journey. professionals and health service managers.
There is a need to ensure that all consumers of TBI services TBI advocacy groups, are taught skills in self-advocacy or are provided with the consumers and healthcare details of an advocacy support group to contact if needed. professionals.
There is a need for healthcare professionals to be trained in Healthcare professionals how to communicate with adults with cognitive- communication impairments to ensure their needs are met.
Healthcare professionals must monitor the recovery and Healthcare professionals and needs of adults with TBI and their significant others healthcare managers. following their discharge from residential services.
Healthcare professionals, consumers and researchers need TBI advocacy groups, to take a leading role in the organisation and funding of TBI consumers, healthcare services at a state and national level. professionals, health service managers and researchers.
10.5 Conclusion
In this chapter I have synthesised the findings of the two stages of this study. The chapter has identified similarities between the two data sources and has highlighted the many clinical implications of the importance of understanding consumers’ experiences and preferences of service provision following TBI. A new model of factors to consider when
planning TBI service provision has been proposed and its use with this clinical population justified from the findings of this study. The concluding chapter of this thesis summarises the unique findings of this research, acknowledges the limitations of the study and identifies directions for future research.
CHAPTER 11
CONCLUSION
In this research I explored the experiences of adults with TBI and their significant others when reflecting on the services they received throughout their continuum of care. A mixed methods, two stage approach was adopted to explore the consumers’ experiences of services provided and problems with the provision of these services. This chapter presents the unique features and contributions of this study, its limitations, and directions for future research.
11.1 Unique Features of the Study
This study investigated the experiences of adults with moderate to severe TBI and their significant others as they navigated their continuum of care following TBI. This research was both ambitious and unique in that it used a mixed methods design to investigate the experiences and beliefs of both adults with TBI and their significant others with regard to their continuum of care following TBI. Using data from both adults with TBI and significant others, the two stages of the study explored not only participants’ experiences of their healthcare journey, but also the perceived impact of geographical location and allocated healthcare funding on experience. Other factors which appeared to impact upon participants’ ability to access services were also investigated. To determine the adequacy of participants’ experiences of healthcare, recollected levels of access were compared to international clinical care guidelines (British Society of Rehabilitation
Medicine & Royal College of Physicians, 2003; New Zealand Guidelines Group, 2006) which are considered to reflect best practice following TBI.
The use of a mixed methods design in the study of consumers’ experiences of healthcare following TBI is unique. By virtue of this design I used TBI questionnaires distributed statewide to uncover the breadth of consumer experience before completing a smaller number of interviews to ascertain the depth of experience. The first stage of the research, surveying the recollections of participants with TBI and their significant others, provided an initial broad focus on the experience of healthcare following TBI. The questionnaires yielded a broad view of the beliefs and experiences of 202 adults with TBI and 184 significant others across Victoria, Australia. The second stage involved 16 follow- up in-depth interviews. These interviews further explored the experiences of 23 participants in greater depth.
The inclusion of both adults with TBI and significant others in this research provided the opportunity to compare the experiences of the two major healthcare consumers involved in the same phenomenon, access to healthcare following TBI, and to identify shared understandings and differences between the two groups. The inclusion of both adults with TBI and significant others in interviews also helped strengthen the reliable recall of both parties. This was important, given that the reliability of recollections of adults with TBI has been questioned because of the likely presence of cognitive communication impairments (Adamovich, 1997; Fearnside & Gurka, 1997; Khan et al., 2003) and the recollections of significant others have been questioned given their emotional status at the time care was accessed (Cusick et al., 2000; Rothman et al., 1991; Sneeuw et al., 1997).
There were a number of unique aspects to this endeavour:
• No other Australian study has conducted an in-depth examination of the
experiences and preferences of adults with TBI and their significant others when
reflecting on healthcare following moderate to severe TBI.
• No other Australian study has conducted an in-depth examination of factors
which affect access to TBI services from the perspective of adults with TBI and
their significant others.
• No other Australian study has mapped the experiences of adults with TBI and
their significant others to international clinical care guidelines to develop an
understanding of current trends in service provision compared to best practice.
11.2 Unique Contributions of the Study
This research formed a unique picture of the current state of consumer experiences of TBI care in Victoria, Australia. The survey identified for the first time how consumers experienced healthcare following a TBI, identifying that even though very few consumers received care in line with clinical care guidelines, overall they were satisfied with the care they received. The research also confirmed expert opinion regarding the impact of allocated funding on access to services (Gray, 2000). In this study, consumers’ experiences of their healthcare journey varied according the funding allocated to pay for their care.
Geographical isolation also influenced the continuum of care consumers received.
However, unlike their response to perceived restrictions in service provision due to allocated funding, affected consumers reported that the requirement to travel to access services due to geographical isolation was acceptable. Of concern were participants’ reports of limited involvement in choices surrounding their care, particularly when in the residential phase of their rehabilitation. The absence of support following their transition to non-residential services was also undesirable.
The series of participant interviews extended my understanding of participants’ experiences when accessing healthcare following TBI. Analysis of the interviews revealed
a number of entirely new perspectives on factors affecting access to services, which had not been previously discussed in the TBI literature. These factors included participants’ acceptance of their head injury and readiness to engage with services, availability of support, presence of advocacy, ability to access the right service at the right time, and ability to access a service which matched participants’ expectations. For the first time, these five person related factors impacting upon the ability of adults with TBI and significant others to access services were identified.
A model adapted from that of Foster et al. (2004) which includes consideration of these factors alongside contexts of care and health professionals’ perceptions has been proposed. It is thought that this model, used in conjunction with clinical care guidelines, will enhance participants’ healthcare journey. Consideration of this model by clinicians is warranted if efficient, appropriate, timely and successful referrals to rehabilitation services are to be made throughout the healthcare journey of adults with TBI.
Comparison of the two data sources in this study (questionnaires and interviews) identified complementary findings in the areas of access to and satisfaction with services, impact of location and healthcare funding on ability to access services, involvement in guiding own care, and need for and availability of support. From these findings, succinct strategies for healthcare consumers, healthcare providers and clinical guideline formulators were identified. These strategies were listed in Table 10.2.
11.3 Limitations of the Study
A number of limitations of this study are acknowledged.
11.3.1 Number of Respondents and Response Rate
The questionnaires were mailed to the home addresses (as recorded in hospital files upon admission to acute care) of 1,771 adults with moderate to severe TBI. In all, 202 adults returned the first questionnaire, an 11.4% response rate, and 184 significant others returned the second questionnaire, a 10.4% response rate. However, of the possible 1,771 questionnaire distributed, 256 were returned unopened. This means that the response rate from participant groups increases slightly to 13.3% and 12.1% respectively. I acknowledge that the response rate is low, but according to Nabors et al. (2002, p. 1043), a response rate of “approximately 15% is comparable to other mail surveys of clinical populations”. A number of possible reasons for the low response rate questionnaires were reviewed in
Chapter 5, Section 5.2. These reasons are not revisited here. However, it is important to note that due to the low response rate to the questionnaires, the findings from them may be skewed.
11.3.2 Characteristics of the Adults with TBI Who Took Part in the Study
The participants in this study represented a range of age groups and education levels. However, a limited range of participants were represented in three areas.
11.3.2.1 Predominance of Women in the Significant Other Group and Men in TBI Group
Male significant others and female participants with TBI were under-represented in this study. Female significant others were 40% more likely to take part in this research and males with TBI were 60% more likely to be participants. However, the high proportion of females within the significant other category is not unique to this study. In international research into the experiences of significant others, over 80% of participants in studies were
female (e.g., 82% in Knight, 1998, 86% in Marsh, 1998 and Murray, 2006). Likewise, the high proportion of males in the TBI group is not surprising given the most recent epidemiological study of TBI conducted by the Australian Institute of Health and Welfare
(2007), in which the average rate of TBI was higher for males in all age groups, with males comprising more than two thirds (69%) of individuals aged 15-24 years with TBI.
Male significant others and females with TBI may have different experiences of healthcare following TBI. These experiences may not have been adequately described in this research, yet are important and require consideration.
11.3.2.2 Ethnicity of Both Participant Groups
Survey data revealed that most participants who took part in this study were
Australians from Anglo-Saxon backgrounds. The experiences of adults with TBI and their significant others from different ethnic cultures were therefore not obtained in this study.
Consideration of the experiences of people from culturally and linguistically diverse backgrounds is important, given the rapid increase over the past 50 years in immigration and settlement in Australia of people with a primary language other than English.
Nevertheless, studies investigating how people from different cultures experience and understand TBI and the process of brain injury rehabilitation suggest that there is a universal experience of TBI which transcends individual cultures (see e.g., Simpson, Mohr,
& Redman, 2000). Therefore, the findings from this study may be generalised with caution to individuals from other ethnic groups.
11.3.2.3 High Functioning TBI Group
The participants in this study appeared to be functioning at a higher level than participants in other studies of adults with a moderate to severe TBI. The high functioning nature of participants in this study was indicated by the high re-employment rate reported by participants following their TBI. At the time the questionnaires were completed, 57% of adults with TBI reported they were employed in paid work. Although the nature of this work was unknown, 67% of those employed reported working for at least 33-38 hours per week.
According to a TBI outcome study by Isaki and Turkstra (2000), people’s level of communication impairment secondary to their TBI is predicitve of work re-entry. Given that the majority of adults with TBI in this study reported being gainfully employed, it is assumed that they had functional cognitive-communication skills to meet their employment demands. Such functional communication skills may have meant that these adults were less likely to be deterred by the length of the questionnaires (i.e., 21 pages) in the first stage of this research, and hence more likely to return them.
11.3.3 Findings Based on Perceptions
The findings reported in this study reflect the experiences of adults with TBI and their significant others when accessing healthcare following head injury in Victoria. The experiences reported are participants’ perceptions of the events that occurred following their TBI. They do not necessarily reflect the reality of the services that were provided.
Therefore, current trends in service provision were not mapped to clinical care guidelines: it was the perceptions of care that were obtained.
Large-scale studies reviewing trends in TBI service provision based on prospective client medical records have been conducted both within Australia and internationally (see e.g., Hodgkinson et al., 2000; Schootman & Fourtes, 2000; Tooth et al., 2001). These studies have investigated client outcome based on services received, client service utilisation patterns and client demand for services following TBI. These studies, although useful for identifying services accessed by adults with TBI, did not consider the unmet needs highlighted by participants in this study.
Data collected on trends in services accessed are also vulnerable to measurement inaccuracies (e.g., coding errors in client databases, missing data) and are often service- specific (e.g., acute services collect their own data, as do residential services and non- residential services). Therefore they reflect only snapshots of the continuum of care of adults with TBI. These problems are being rectified by national (e.g., National Research
Trauma Institute, 2009) and international research programs (i.e., American Traumatic
Brain Injury Model Systems, Bushnick, 2003) which are currently being devised to collect consistent and comprehensive data from all stages in clients’ continuum of care. These findings are yet to be published in Australia.
In the absence of a useful system to investigate current trends in service provision, this study relied on service users’ perceptions of care. However, this was not the only reason for investigating perceptions. Research relating to health outcomes recognises that positive consumer perceptions of services are more important than enacted services. For example, Ergh et al. (2002) found that perceived support was more beneficial for consumers following TBI than enacted support. “Enacted support” refers to actual helping behaviours and perceived support refers to an individual’s cognitive appraisal of his/her reliable social connections (Ergh et al., 2002). That research indicates that if consumers
perceive they are supported, it is as beneficial as, if not more so than, receiving actual helping behaviours. By logical extension it may then be argued that having perceived access to services, if needed, is as beneficial as, if not more so than, actually receiving them.
11.3.4 Remoteness Index
The measure of remoteness, the Accessibility/Remoteness Index of Australia
(Australian Institute of Health and Welfare, 2004), included in this study is considered to have a number of flaws which restricted my ability to fully investigate the impact of geographical location on participants’ experiences of services following TBI. The flaws included that dissimilar areas are often allocated the same ARIA class, since remoteness is defined on the basis of road distance from any point to the nearest town in each of five population centre types (see Chapter 5, Section 5.3.2.1 for more detail) (Commonwealth
Department of Health and Aged Care, 2001). For example, NSW cities Dubbo and Urana, with populations of 36,701 and 1,497 respectively, fell into the same ARIA class, even though the accessibility of people to goods and services in these regions was likely to be very different. The towns fell into the same ARIA class because Dubbo is a large regional centre and Urana has moderate proximity (i.e., 100km by road) to Wagga and Albury.
Another flaw of the ARIA classification system is that it places 81% of the
Australian population as living in the most accessible class (i.e., highly accessible)
(Australian Institute of Health and Welfare, 2004). This leaves 19% of the population to be shared between the other four ARIA classes, making statistical comparison less reliable.
Consequently, as over 86% of participants reported living in a highly accessible area, I was unable to validly complete any form of statistical comparison to investigate the relationship between reported abilities to access services and geographical location.
11.4 Directions for future research
In light of the limitations considered in the preceding section and in light of the findings of this research, there are several directions for future research in this area. In the current study, only 23 adults with TBI and their significant others were interviewed in depth about their perceptions of healthcare following a TBI. Further research could attempt to ascertain the views of a wider group of TBI healthcare consumers about the same topic.
A focus group of healthcare consumers could also be conducted to further discuss the five person related factors arising from this research and their impact on participants’ access to services through time, as displayed in the stages of rehabilitation model presented in
Chapter 9.
Reflection on healthcare providers’ perceptions of the experiences of adults with
TBI and their significant others following TBI would also be beneficial. This is of particular interest given the discrepancies alluded to in this research regarding the values placed on referrals made to local versus specialist services by consumers and healthcare providers.
Given the weaknesses inherent in the use of ARIA as a measure for remoteness, further examination of the impact of geographical isolation on access to healthcare following TBI is warranted. Consideration is also warranted of the impact of distance decay
(Wilson et al., 2002) on healthcare consumers’ wishes to access services. Utilisation of a different tool to measure remoteness, as well as the investigation of consumers’ experiences of care in a geographically larger state, is recommended.
Investigation of the degree of alignment between healthcare consumers’ perceptions of experience and the reality of service provision following TBI would also be interesting.
Matching the reality of service provision in Australia with international clinical care
guidelines would also be a useful exercise. This would allow current services to be benchmarked against a gold standard, and from that recommendations for future funding and service allocation could be made. A study of this nature would also provide useful information for the formation of national guidelines taking into account the different funding structures and unique geography of Australia.
11.5 Concluding remarks
During the course of this thesis, I have had the opportunity to gain a much deeper understanding of the experiences of adults with TBI and their families when attempting to access services following head injury. This understanding transcends what I thought I knew as a specialist clinician working in the area. I was surprised by some of the material the participants shared with me in the interviews. I reflected on how the limited time many clinicians have to spend with adults with TBI and their families can often lead to inappropriate service referrals due to ignorance of consumers’ needs and perceptions. The differences between my perceptions, participants’ shared experiences, and recommendations made in clinical care guidelines, indicate that service providers and those who define best practice could certainly learn from reflection on the participant interviews.
I hope that the in-depth understanding of participants’ beliefs and experiences which have been shared in this thesis will act as a roadmap for improvements in service delivery and healthcare policy.
I began this thesis with a strong belief in the merits of clinical care guidelines and a desire to right perceived inequity resulting from geographical location or allocated funding model. Consistent with qualitative research, I bracketed my assumptions and biases and adopted a methodology that allowed adults with TBI and their significant others to have a
voice about what they wanted. I found (to my surprise) that my preconceived views of those inequities did not coincide with the main concerns of the participants. Instead, they spoke of the importance of person related factors that needed to be worked through before and during service allocation. These factors included the process of acceptance and readiness, the need for support, the importance of being empowered to advocate for self, the need to have the right service at the right time, and the need for explicit conversations to be held between healthcare consumers and providers regarding matched expectations of the services provided. Interestingly, participants reported that until these factors were considered and resolved, consumers were likely to engage with services only temporarily, if at all, regardless of service provider or clinical care recommendations.
Although clinical care guidelines recommend a continuum of care that is widely recognised as best practice for intervention following TBI, this intervention may not be what is wanted, needed and useful for people with TBI and their families. Service providers and guideline formulators should be open to the possibility that, if recommendations for intervention are not useful for certain clients with TBI, then service provision needs to be adapted, regardless of the time pressures imposed by service policy and attempts to maximise client gains during periods of greatest neuroplasticity. The person related factors of individual adults with TBI and their significant others should be continually reviewed and considered, in addition to pressures related to the context of care (e.g., policy and resource allocation) and health professionals’ perceptions of client characteristics (i.e., clinical and non-clinical characteristics), before referrals for services are made. For this to occur, a model for service referrals considering the needs of all appropriate stakeholders, such as that proposed in Chapter 9, should be adopted. Only when a match exists between the characteristics of services provided and the beliefs and expectations of the adults with
TBI and their families, will available services be utilised effectively and equity in TBI care achieved.
REFERENCES
Accident Rehabilitation and Compensation Insurance Corporation & National Health Committee. (1998). Traumatic brain injury rehabilitation guidelines. Medical Journal of Australia, 167, 293-294. Adamovich, B. L. (1997). Traumatic brain injury. In L. L. Lapointe (Ed.), Aphasia and related neurogenic language disorders (2nd ed., pp. 226-237). New York: Thieme Medical Publishers. Albert, S. M., Im, A., Brenner, L., Smith, M., & Waxman, R. (2002). Effect of a social work liaison program on family caregivers to people with brain injury. Journal of Head Trauma Rehabilitation, 17(2), 175-189. Annegers, J. F., Garbow, J. D., & Kurland, L. T. (1980). The incidence, causes, and secular trends of head trauma in Olmsted County, Minnesota. Neurology, 30, 912-919. Attitride-Stirling, J. (2001). Thematic networks: An analytic tool for qualitative research. Qualitative Research, 1(3), 385-405. Australasian Faculty of Rehabilitation Medicine. What is Rehabilitation Medicine? Retrieved September 4, 2009, from http://afrm.racp.edu.au/index.cfm?objectid=5F2AF0BC-DFA1- 0180-7C797FBBE2985449.html. Australian Bureau of Statistics. (2001). Outcomes of ABS views on remoteness consultation, Australia. Canberra: Commonwealth of Australia. Australian Institute of Health and Welfare. (2004). Rural, regional and remote health: A guide to remoteness classifications. Canberra: Australian Government. Australian Institute of Health and Welfare. (2007). Disability in Australia: Acquired brain injury. Canberra: Australian Government. Avesani, R., Salvi, G., Rigoli, G., & Gambini, M. G. (2005). Reintegration after severe brain injury: A retrospective study. Brain Injury, 19(11), 933-939. Barnes, E. F., Frank, E. M., Montgomery, A., & Nichols, M. (2005). Factors predicting rehabilitative service provision in adults with traumatic brain injury. Journal of Medical Speech-Language Pathology, 13(1), 69-84. Bastian, H. (1996). Raising the standard: Practice guidelines and consumer participation. International Journal for Quality in Health Care, 8, 485-490. Bastian, H. (1998). Speaking up for ourselves: The evolution of consumer advocacy in health care. International Journal of Technology Assessment in Health Care, 14(1), 3-23. Becker, G. (1997). Disrupted lives: How people create meaning in a chaotic world. Los Angeles, CA: University of California Press. Bent, A. (1999). Allied health in central Australia: Challenges and rewards in remote area practice. Australian Journal of Physiotherapy, 45(3), 203-212. Bergner, M., Bobbitt, R. A., Carter, W. B., & Gilson, B. S. (1981). The sickness impact profile: Development and final revision of a health status measure. Medical Care, 19, 787-805. Blight, R. (1991). Improving resource allocation and infrastructure. Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland. Boake, C. (1989). A history of cognitive rehabilitation of head injured patients. The Journal of Head Trauma Rehabilitation, 4, 1-8.
Bordens, K. S., & Abbott, B. B. (2008). Research design and methods: A process approach. (7th ed.). New York: The McGraw Hill Companies. Bourke, L. (2001). Australian rural consumers’ perceptions of health issues. Australian Journal of Rural Health, 9, 1-6. Bowling, A. (2002). Unstructured interviewing and focus groups. In A. Bowling (Ed.), Research methods in health: Investigating health and health services (2nd ed.). Buckingham: Open University Press. Brain Injury Association of Queensland. (2009). About brain injury. Retrieved February 2, 2009, from http://braininjury.org.au/portal/services/about-brain-injury.html. Brain Trauma Foundation. (2003). Guidelines for the acute medical management of severe traumatic brain injury in infants, children and adolescents. Retrieved September 4, 2009, from http://www.braintrauma.org/site/PageServer?pagename=Guidelines.html. Brain Trauma Foundation. (2005). Guidelines for the field management of combat-related head trauma. New York: Brain Trauma Foundation. Brain Trauma Foundation. (2006). Guidelines for the surgical management of traumatic Brain injury. Retrieved September 4, 2009, from http://www.braintrauma.org/site/PageServer?pagename=Guidelines.html. Brain Trauma Foundation. (2007). Guidelines for the management of severe traumatic brain injury. Retrieved September 4, 2009, from http://www.braintrauma.org/site/PageServer?pagename=Guidelines.html. Brain Trauma Foundation. (2008a). Guidelines for pre-hospital management of severe traumatic brain injury (2nd ed.). New York: Brain Trauma Foundation. Brain Trauma Foundation. (2008b). Research: Research based practices. Retrieved October 6, 2005, from http://www.braintrauma.org/site/PageServer?pagename=Research. html. British Society of Rehabilitation Medicine, & Royal College of Physicians. (2003). Rehabilitation following acquired brain injury: National clinical guidelines. London: The Lavenham Press. Brooks, D., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1986). The five year outcome of severe blunt head injury: A relative's view. Journal of Neurology, Neurosurgery, and Psychiatry, 49, 764-770. Brooks, D. N. (1991). Presidential address, Innsbruck: The head-injured family. Journal of Clinical and Experimental Neuropsychology, 13, 155-188. Brooks, D. N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1987). The effects of severe head injury on patient and relatives within seven years of injury. Journal of Head Trauma Rehabilitation, 2, 1-13. Brooks, D. N., & McKinlay, W. (1983). Personality and behavioural change after severe blunt head injury - A relatives view. Journal of Neurology, Neurosurgery, and Psychiatry, 46, 336-344. Brookshire, R. H. (2003). Introduction to neurogenic communication disorders. Missouri: Mosby. Brown, M. (1991). Identifying the health needs of remote and rural communities. . Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland. Brown, R., Pain, K., Berwald, C., Hirschi, P., Delehanty, R., & Miller, H. (1999). Distance education and caregiver support groups: Comparison of traditional and telephone groups. The Journal of Head Trauma Rehabilitation, 14(3), 269-276.
Brownlea, A. A., McDonald, G.T (1981). Health and education services in sparseland Australia. In R. E. Lonsdale, Holmes, J.H (Ed.), Settlement systems in sparsely populated regions: The United States and Australia (pp. 322-346). New York: Pergamon Press. Bruce, O., Peter, R., Patricia, J., & Nancy, T. S. (2006). Clinical use of the Mayo-Portland Adaptability Inventory in rehabilitation after paediatric acquired brain injury. Developmental Medicine & Child Neurology, 48(11), 918-922. Bulger, E. M., Nathens, A. B., Rivara, F. P., Moore, M., MacKenzie, E. J., & Jurkovich, G. J. (2002). Management of severe head injury: Institutional variations in care and effect on outcome. Critical Care Medicine, 30(8), 1870-1876. Burleigh, S. R., Farber, R. S., & Gillard, M. (1998). Community integration and life satisfaction after traumatic brain injury: Long term findings American Journal of Occupational Therapy, 52(1), 45-52. Bush, B. A., Novack, T. A., Malec, J. F., Stringer, A. Y., Millis, S. R., & Madan, A. (2003). Validation of a model for evaluating outcome after traumatic brain injury: Long term findings. Archives of Physical Medicine and Rehabilitation, 84, 1803-1807. Bushnick, T. (2003). Introduction: The traumatic brain injury model systems of care. Archives of Physical Medical Rehabilitation, 84, 151-152. Cabana, M. D., Rand, C. S., Powe, N. R., Wu, A. W., Wilson, M. H., Abboud, P. A., et al. (1999). Why don't physicians follow clinical practice guidelines? JAMA: Journal of the American Medical Association, 282(15), 1458. Carey, R. G., Seibert, J. H., & Posavac, E. J. (1988). Who makes the most progress in inpatient rehabilitation? An analysis of functional gain. Archives of Physical Medicine and Rehabilitation, 69(5), 337-343. Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267-283. Cassidy, J. D., Carroll, L. J., & Peloso, P. M. (2004). Incidence, risk factors and prevention of mild traumatic brain injury: Results of the WHO collaborating centre task force on mild traumatic brain injury. Journal of Rehabilitation Medicine, 43, 28-60. Chapparo, C., & Ranka, J. (2006). Occupational performance model (Australia): Model illustration. Retrieved March 22, 2009, from http://www.occupationalperformance.com/index.php/au/home/model_illustration.html. Charmaz, K. (1995). The body, identity and self: Adapting to impairment. The Sociology Quarterly, 36(4), 657-680. Charmaz, K. (1997). Good days, bad days: The self in chronic illness and time. (2nd ed.). New Brunswick, New Jersey: Rutgers University Press. Chesnut, R. M., Carney, N., Maynard, H., Mann, N. C., Patterson, P., & Helfand, M. (1999). Summary report: Evidence for the effectiveness of rehabilitation for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 14(2), 176-188. Cicerone, K. D., Mott, T., Azulay, J. A., & Friel, J. (2004). Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 85, 1643-1650. City of Ballarat. (2009). Maps: City of Ballarat. Retrieved June 12, 2009, from http://www.ballarat.vic.gov.au/Global/Maps/index.aspx.html. City of Greater Bendigo. (2009). Demographic profile. Retrieved June 12, 2009, from http://www.bendigo.vic.gov.au/page/page.asp?page_Id=55.html.
Clarridge, B. R., & Massagli, M. P. (1989). The use of female spouse proxies in common symptom reporting. Medical Care, 27(4), 352-366. Claude Blais, M., & Boisvert, J. M. (2005). Psychological and marital adjustment in couples following a traumatic brain injury: A critical review. Brain Injury, 19(14), 1223-1235. Clyburn, L., Stones, M., Hadjistavropoulos, T., & Tuokko, H. (2000). Predicting caregiver burden and depression in Alzheimer’s disease. Journals of Gerontology Series B Psychological Sciences and Social Sciences, 55(1), S2-S13. Coetzer, R., & Rushe, R. (2005). Post-acute rehabilitation following traumatic brain injury: are both early and later improved outcomes possible? International Journal of Rehabilitation Research, 28(4), 361-363. Colantonio, A., Dawson, D. R., & McLellan, B. A. (1998). Head injury in young adults: Long term outcome. Archives of Physical Medical Rehabilitation, 79, 550-558. Coleman, T. J., Thompson-Smith, T., Pruitt, G. D., & Richards, L. N. (1999). Rural service delivery: Unique challenges, creative solutions. American Speech and Hearing Association, 41, 40-45. Commonwealth Department of Health and Aged Care. (2001). Measuring remoteness: Accessibility/remoteness index of Australia (ARIA). Adelaide: University of Adelaide. Comper, P., Bisschop, S. M., Carnide, N., & Tricco, A. (2005). A systematic review of treatments for mild traumatic brain injury. Brain Injury, 19(11), 863-880. Accident Rehabilitation and Compensation Insurance Corporation, & National Health Committee. (2006). Traumatic brain injury: Diagnosis, acute management and rehabilitation. Wellington: New Zealand Guidelines Group. Corrigan, J. D., Whiteneck, G., & Mellick, D. (2004). Perceived needs following traumatic brain injury. Journal of Head Trauma Rehabilitation, 19(3), 205-216. Creswell, J. W., & Plano Clark, V. L. (2007). Designing and conducting mixed methods research. Thousand Oaks, CA: Sage Publications. Curtin, M., Jones, J., Mitsch, V., Alston, M., McAllister, L., Ginnivan, D., et al. (2008). Participation following traumatic brain injury for people residing in rural and regional areas of NSW. Albury, NSW: Charles Sturt University. Cusick, C. P., Brooks, C. A., & Whiteneck, G. G. (2001). The use of proxies in community integration research. Archives of Physical Medicine and Rehabilitation, 82(1018-1024). Cusick, C. P., Gerhart, K. A., & Mellick, D. C. (2000). Participant-proxy reliability in traumatic brain injury outcome research. Journal of Head Trauma Rehabilitation, 15(1), 739-749. Cutrona, C. E., & Russell, D. (1987). The provisions of social relationships and adaptation stress. In W. H. Jones & D. Periman (Eds.), Advances in personal relationships (Vol. 1). Greewich, CT: JAI Press. D'Elia, L. F., Satz, P., Uchiyama, C. L., & White, T. (1996). Colour trails tests. Odessa, FL: Psychological Assessment Resources. Davidson, B., & McAllister, L. (2002). An introduction to qualitative research approaches. ACQuiring Knowledge in Speech, Language and Hearing, 4(1), 28-31. Degeneffe, C. E. (2001). Family caregiving and traumatic brain injury. Health & Social Work, 26(4), 257-268. Denzin, Y. K., & Lincoln, Y. S. (2005). The sage handbook of qualitative research. (Vol. 3). Thousand Oaks, California: Sage Publications.
Department of Health and Ageing. (2001). Measuring remoteness: Accessibility/remoteness index of Australia (ARIA) revised edition. Occasional Papers: New Series Number 14 Retrieved May 9, 2009, from http://www.health.gov.au/internet/main/publishing.nsf/Content/health- historicpubs-hfsocc-ocpanew14a.html. Department of Human Services. (1995). Public hospital patient charter. Retrieved June 8, 2009, from www.health.vic.gov/patientcharter/resources/materials.html. Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: An introductory report. Psychological Medicine, 13, 595-605. Dillman, D. A. (2002). Mail and internet surveys: The tailored design method (2nd ed.). New York: John Wiley & Sons. Disability Online. (2009). Easy English. Retrieved January 20, 2009, from http://www.disability.vic.gov.au/dsonline/dsarticles.nsf/pages/easy_english?OpenDocument. html. Dumont, C., Gervais, M., Fougeyrollas, P., & Bertrand, R. (2004). Toward an explanatory model of social participation for adults with traumatic brain injury. Journal of Head Trauma Rehabilitation, 19(6), 431-444. Durgin, C. J. (2000). Increasing community participation after brain injury: Strategies for identifying and reducing the risks. Journal of Head Trauma Rehabilitation, 15(6), 1195- 1207. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment devise. Journal of Marriage and Family Therapy, 9, 171-180. Ergh, T. C., Rapport, L. J., Coleman, R. D., & Hanks, R. A. (2002). Predictors of caregiving and family functioning following traumatic brain injury: social support moderates caregiver distress. Journal of Head Trauma Rehabilitation, 17(2), 155-174. Evans, P.W., Palsane, M.N., & Carrere, S. (1987). Type A behaviour and occupational stress: A cross cultural study of blue collar workers. Journal of Personality and Social Psychology, 36, 1213-1200. Ewing, J. (1984). Detecting alcoholism: The CAGE questionnaire. The Journal of the American Medical Association, 252, 294-297. Eyles, J., & Woods, K. J. (1983). The social geography of medicine and health. London: Croom Helm. Ezzy, D. (2002). Qualitative analysis: Practice and innovation. London: Routledge. Fagen, C. (1996). Headway rural access program. Victoria: Headway. Fakhry, S. M., Trask, A. L., Waller, M. A., & Watts, D. D. (2004). Management of brain-injured patients by an evidence-based medicine protocol improves outcomes and decreases hospital charges... including commentary by Valadka AB and discussion. Journal of Trauma, 56(3), 492-500. Farmer, J. E., Clark, M. J., & Sherman, A. K. (2003). Rural versus urban social support seeking as a moderating variable in traumatic brain injury outcome. Journal of Head Trauma Rehabilitation, 18(2), 116-127. Faul, M., Wald, M. M., Rutland-Brown, W., Sullivent, E. E., & Sattin, R. W. (2007). Using a cost- benefit analysis to estimate outcomes of a clinical treatment guideline: Testing the brain trauma foundation guidelines for the treatment of severe traumatic brain injury. Journal of Trauma-Injury Infection and Critical Care, 63(6), 1271-1278.
Fearnside, M. R., Crook, R., & McDougall, P. (1993). The Westmead head injury project - outcome in severe head injury: A comparative analysis of pre-hospital, clinical and CT variables. Brain Journal of Neurosurgery, 7, 267-279. Fearnside, M. R., & Gurka, J. A. (1997). The challenge of traumatic brain injury. Medical Journal of Australia, 167, 293-294. Field, M. J., & Lohr, M. J. (Eds.). (1990). Clinical practice guidelines: Directions for a new program. Washington, DC: National Academies Press. Fleming, J., Tooth, L., Hassell, M., & Chan, W. (1999). Prediction of community integration and vocational outcome 2-5 years after traumatic brain injury rehabilitation. Brain Injury, 13(6), 417-431. Fleming, J. M., Strong, J., & Ashton, R. (1998). Cluster analysis of self awareness levels in adults with traumatic brain injury and relationship to outcome. Journal of Head Trauma Rehabilitation, 13(5), 39-51. Flemingham, K. L., Baguley, I. J., & Crooks, J. (2001). A comparison of acute and post-discharge predictors of employment 2 years after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 82, 435-439. Florian, V., Katz, S., & Lahav, V. (1989). Impact of traumatic brain damage on family dynamics and functioning: A review. Brain Injury, 3, 219-233. Forducey, P. G., Ruwe, W. D., Dawson, S. J., Scheideman-Miller, C., McDonald, N. B., & Hantla, M. R. (2003). Using telerehabilitation to promote TBI recovery and transfer of knowledge. NeuroRehabilitation, 18, 103-111. Fortune, N., & Wren, X. (1999). The definition, incidence and prevalence of acquired brain injury in Australia. Canberra: Australian Institute of Health and Welfare. Foster, M., Fleming, J., Tilse, C., & Rosenman, L. (2000). Referral to post-acute care following traumatic brain injury in the Australian context. Brain Injury, 14(12), 1035-1045. Foster, M., & Tilse, C. (2003). Referral to rehabilitation following traumatic brain injury: A model for understanding inequities in access. Social Science & Medicine, 56(10), 2201-2210. Foster, M., Tilse, C., & Fleming, J. (2004). Referral to rehabilitation following traumatic brain injury: Practitioners and the process of decision making. Social Science & Medicine, 59, 1867-1878. Frank, A. W. (2002). At the will of the body: Reflections on illness. New York: Houghton Mifflin Company. Frattali, C., Bayles, K., Beeson, P., Kennedy, M. R. T., Wambaugh, J., & Yorkston, K. (2003). Development of evidence-based practice guidelines: Committee update. Journal of Medical Speech-Language Pathology, 11(3), ix-xvii. Fyffe, C., McCubbery, J. (1996). 'If only we had somewhere to turn ...' The service needs of people with acquired brain injury in a rural community. Australian Journal of Rural Health, 4, 232- 236. Gabella, B. A., Hoffman, R. E., Marnie, W. M., & Stallones, L. (1997). Urban and rural traumatic brain injuries in Colorado. Ann Epidemiol, 7(3), 207-212. Gentleman, D. (2001). Rehabilitation after traumatic brain injury. Trauma, 3, 193-204. Gervasio, A. H., & Kreutzer, J. S. (1997). Psychological distress after traumatic brain injury: A large sample study. Journal of Head Trauma Rehabilitation, 12, 14-26.
Giles, G.M., & Clark-Wilson, J. (1993). Brain injury rehabilitation: A neurofunctional approach. London: Chapman & Hall. Gillham, B. (2000). Developing a questionnaire. New York: Continuum International Publishing Group. Given, B. A., Kozachik, S., Collins, C., Devoss, D., & Given, C. W. (2001). Caregiver role strain. In M. Maas, K. Buckwalter, M. Hardy, T. Tripp-Reimer & M. Titler (Eds.), Nursing care of older adults diagnosis: Outcome and interventions (pp. 679-695). St Louis, MO: Mosby. Goldberg, D. (1978). Manual of the general health questionnaire. Slough: NFER. Goranson, T. E., Graves, R. E., Allison, D., & La Freniere, R. (2003). Community integration following multidisciplinary rehabilitation for traumatic brain injury. Brain Injury, 17, 759- 774. Gouvier, W. D., Blanton, P. D., LaPorte, K. K., & Nepomuceno, C. (1987). Reliability and validity of the Disability Rating Scale and the Levels of Cognitive Functioning Scale in monitoring recovery from severe head injury. Archives of Physical Medicine & Rehabilitation, 68(2), 94- 97. Granger, C. V., & Gersham, C. E. (1984). Functional assessment in rehabilitation medicine. Baltimore: Williams and Wilkins. Gray, D. S. (2000). Slow-to-recover severe traumatic brain injury: A review of outcomes and rehabilitation effectiveness. Brain Injury, 14(11), 1003-1014. Grbich, C. (1999). Qualitative research design. In A. Minichello, K. Sullivan, K. Greenwood & R. Axford (Eds.), Handbook for research methods in health sciences. China: Pearsons Education Australia. Greene, J. C., Caracelli, V. J., & Graham, W. D. (1989). Toward a conceptual framework for mixed methods evaluation designs. Educational Evaluation and Policy Analysis, 11(3), 255-274. Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59-82. Haas, J., Cope, C.N., & Hall, K. (1987). Premorbid prevalence of poor academic performance in severe head injury. Journal of Neurology, Neurosurgery, and Psychiatry, 50, 52-56. Hall, K. M., Karzmark, P., Stevens, P., Englander, J., O'Hare, P., & Wright, J. (1994). Family stressors in traumatic brain injury: a two-year follow-up. Archives of Physical Medicine and Rehabilitation, 75, 876-884. Hanks, R. A., Rapport, L. J., & Vangel, S. (2007). Caregiver appraisal after traumatic brain injury: The effects of functional status, coping style, social support and family functioning. NeuroRehabilitation, 22, 43-52. Hanson, W. E., Creswell, J. W., Plano Clark, V. L., Petska, K. S., & Creswell, J. D. (2005). Mixed Methods Research Designs in Counselling Psychology. Journal of Counselling Psychology, 52(2), 224-235. Harradine, P. G., Winstanley, J. B., Tate, R., Cameron, I. D., Baguley, I. J., & Harris, R. D. (2004). Severe traumatic brain injury in New South Wales: Comparable outcomes for rural and urban residents. The Medical Journal of Australia, 181(3), 130-134. Harris, J. K. J., Godfrey, H. P. D., Partridge, F. M., & Knight, R. G. (2001). Caregiver depression following traumatic brain injury: A consequence of adverse effects on family members? Brain Injury,15(3), 223-238. Health Department of Victoria. (1991). Summary of report of 'head injury impact' project. Health Department Victoria, Community Services Victoria and Transport Accident Commission.
Hersh, D. (2001). Experiences of ending aphasia therapy. International Journal of Language & Communication Disorders, 36, 80-85. Hersh, D. (2003). "Weaning" clients from aphasia therapy: Speech pathologists' strategies for discharge. Aphasiology, 17(11), 1007-1029. Hickson, M. (2008). Research handbook for health care professionals. Oxford: Plackwell Publishing. Higgs, J., & Adams, R. (1996). Seeking quality in qualitative research. In J. Higgs (Ed.), Qualitative research: Discourse on methodologies (pp. 82-94). Sydney: Hampden Press. Hill, S. (1994). Staff recruitment and retention in rural Victoria. Australian Communication Quarterly: Issues in Language, Speech & Hearing, Summer, 22-23. Hiller, S. L., Hiller, J. E., & Metzer, J. (1997). Epidemiology of traumatic brain injury in South Australia. Brain Injury, 11(9), 649-659. Hodgkinson, A., Veerabangsa, A., Drane, D., & McCluskey, A. (2000). Service utilization following traumatic brain injury. Journal of Head Trauma Rehabilitation, 15(6), 1208-1226. Hodgson, L. (1991). The allied health perspective. Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland. Honey, K., & McCubbery, K. (1991). Grampians region acquired brain injury project. Melbourne, VIC: Monash University. Hughes, P. (2003). Paradigms, methods and knowledge. In G. MacNaughton, S. Rolfe & J. Siraj- Blatchford (Eds.), Doing early childhood research: International perspectives on theory and practice. Crows Nest, NSW: Allen & Unwin. Humphreys, J., & Mathews-Cowey, S. (1997). Indicators of preferences of health care consumers. Paper presented at the 4th National Rural Health Conference. Humphreys, J., Mathews-Cowey, S., & Weinand, H. C. (1997). Factors in accessibility of general practice in rural Australia. Medical Journal of Australia, 166(11), 577-580. Humphreys, J., & Rolley, F. (1993). Health care behaviour and service provision in rural Australia. Armidale, New South Wales: University of New England, Department of Geography and Planning. Humphreys, J., Rolley, F. (1991). Health and health care in rural Australia. Armidale, Australia: University of New England, Department of Geography and Planning. Humphreys, J. S., & Weidnand, H. C. (1991). Evaluation consumer preferences for health care services in rural Australia. Australian Geographer, 22(1), 44-56. Institute of Medicine. (1992). Guidelines for clinical practice from development to use. Washington, DC: National Academy Press. Institute of Trauma and Health Injury Management. (2006). Initial management of closed head injury in adults. Sydney, NSW: NSW Institute of Trauma and Health Injury Management. Isaki, E., & Turkstra, L. (2000). Communication abilities and work re-entry following traumatic brain injury. Brain Injury, 14(5), 441-453. iSelect. (2009a). Extras cover. Retrieved February 4, 2009, from http://www.iselect.com.au/private- health-insurance/info/hospital-cover.html. iSelect. (2009b). Hospital cover. Retrieved February 4, 2009, from http://www.iselect.com.au/private-health-insurance/info/hospital-cover.html.
Jackson, C. J., & Furnham, A. (2000). Designing and analysing questionnaires and surveys: A manual for health professionals and administrators London: Whurr. Jackson, J. D. (1994). After rehabilitation: Meeting the long-term needs of persons with traumatic brain injury. American Journal of Occupational Therapy, 50, 47-52. Johnstone, B., Nossaman, L. D., Schopp, L. H., Holmquist, L., & Rupright, S. J. (2002). Distribution of services and supports for people with traumatic brain injury in rural and urban Missouri. The Journal of Rural Health, 18(1), 109-116. Kabacoff, R. I., Miller, I. W., Bishop, D. S., Epstein, N. B., & Keitner, G. I. (1990). A psychometric study of the McMaster family assessment devise in psychiatric, medical and nonclinical samples. Journal of Family Psychology, 3, 431-439. Kaplan, C. P. (2001). The Community Integration Questionnaire with new scoring guidelines: Concurrent validity and need for appropriate norms. Brain Injury, 15, 725-731. Kaplan, S. H., Greenfield, S., & Ware, J. E. (1989). Assessing the effects of physician-patient interactions on the outcome of chronic disease. Medical Care, 27(3), 239-244. Karlovits, T., & McColl, M. A. (1999). Coping with community reintegration after severe brain injury: A description of stresses and coping strategies. Brain Injury, 13(11), 845 - 861. Katz, D. I., & Alexander, M. P. (1994). Traumatic brain injury: Predicting course of recovery and outcome for patients admitted to rehabilitation. Archives of Neurology, 51(7), 661-670. Kay, T., Cavallo, M. M., Ezrachi, O., & Vavagiakis, P. (1995). The Head-Injury Family Interview: A clinical and research tool. Journal of Head Trauma Rehabilitation, 10(2), 12-31. Keen, A. (1999). Speech pathology survey: Parents acceptance of waiting list times. Australian Communication Quarterly: Issues in Language, Speech & Hearing, February, 14-16. Keith, R. A., Granger, C. V., Hamilton, B. B., & Sherwin, F. S. (1987). The functional independence measure: A new tool for rehabilitation. Advances in Clinical Rehabilitation, 1, 6-18. Keleher, H. (1999). Rural public health matters. Australian and New Zealand Journal of Public Health, 23, 342- 344. Kelly, G., & Headway. (1999). Home and Community Care: Applying for funding for social support and navigating the system. Australia: Department of Human Services. Khan, F., Baguley, I. J., & Cameron, I. D. (2003). Rehabilitation after traumatic brain injury. Medical Journal of Australia, 178(6), 290-295. Knight, R. G., Devereux, R., & Godfrey, H. P. (1998). Caring for a family member with a traumatic brain injury. Brain Injury, 12(6), 467-481. Knight, R. G., Devereux, R. C., & Godfrey, H. P. D. (1997). Psychosocial consequences of caring for a spouse with multiple sclerosis. Journal of Clinical and Experimental Neuropsychology, 19(1), 7-19. Kolakowsky-Hayner, S. A., Kreutzer, J. S., & Miner, K. D. (2000). Validation of the Service Obstacles Scale for the traumatic brain injury population. NeuroRehabilitation, 14(3), 151- 158. Koskinen, S. (1998). Quality of life 10 years after a very severe traumatic brain injury: The perspective of the injured and the closest relative. Brain Injury, 12(8), 631-648. Kreutzer, J. S. (1988). Family needs questionnaire. Richmond: Medical College of Virginia. Kreutzer, J. S., Gervasio, A. H., & Camplair, P. S. (1994). Primary caregivers' psychological status and family functioning after traumatic brain injury. Brain Injury, 8, 197-210.
Kuipers, P., Kendall, M., Fleming, J., & Tate, R. (2004). Comparison of the Sydney Psychosocial Reintegration Scale (SPRS) with the Community Integration Questionnaire (CIQ): Psychometric properties. Brain Injury, 18(2), 161-177. Lawton, M. P., Kleban, M. H., Moss, M., Rovine, M., & Glicksman, A. (1989). Measuring caregiving appraisal. Journals of Gerontology, 44(3), P61-P71. LeFebvre, H., Pelchat, D., Swaine, B., Gelinas, I., & Levert, M. J. (2005). The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Injury, 19(8), 585-597. Leufer, T., & Cleary-Holdforth, J. (2009). Evidence-based practice: Improving patient outcomes. Nursing Standard, 23(32), 35-39. Liamputtong, P., & Ezzy, D. (1999). Qualitative research methods (2nd ed.). Oxford: Oxford University Press. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park: Sage Publications. Livingston, M. G. (1987). Head injury: The relatives' response. Brain Injury, 1, 33-39. Livingston, M. G., Brooks, D. N., & Bond, M. R. (1985a). Patient outcome in the year following severe head injury and relatives' psychiatric and social functioning. Journal of Neurology, Neurosurgery, and Psychiatry, 48, 876-881. Livingston, M. G., Brooks, D. N., & Bond, M. R. (1985b). Three months after severe head injury: Psychiatric and social impact on relatives. Journal of Neurology, Neurosurgery, and Psychiatry, 48, 870-875. Long, K., Sudha, S., & Mutran, E. J. (1990). Elder proxy agreement concerning the functional status and medical history of the older person: The impact of caregiver burden and depressive symptomology. Journal of the American Geriatric Society., 46, 1103-1111. Lyle, D. M., Pierce, J. P., & Freeman, E. A. (1986). Clinical course and outcome of severe head injury in Australia. Journal of Neurosurgery, 65, 15-18. Maas, A. I., Dearden, M., Teasdale, G. M., Braakman, R., Cohadon, F., Iannotti, F., et al. (1997). EBIC - guidelines for management of severe head injury in adults: European Brain Injury Consortium. Acta Neurochir (Wien). 139(4), 286-294. Maas, A. I. R. (2002). Guidelines for head injury: Their use and limitations. Neurological Research, 24(January), 19-23. Machamer, J., Temkin, N., & Dikmen, S. (2002). Significant other burden and factors related to it in traumatic brain injury. Journal of Clinical and Experimental Neuropsychology, 24(4), 420- 433. Mackay, L. E., Bernstein, B. A., Chapman, P. E., Morgan, A. S., & L.S., M. (1992). Early intervention in severe head injury: long-term benefits of a formalized program. Archives of Physical Medicine and Rehabilitation, 73(7), 635-641. Macniven, E., & Garner, S.H. (1994). Factors effective head injury rehabilitation outcome: Premorbid and clinical parameters. In M. A. Finlayson (Eds.), Brain injury rehabilitation: Clinical considerations. Baltimore: William and Wilkins. MacPhail, M. (1998). Accommodation support services for persons with acquired brain injury. Victoria: Ballarat Health Service. Magaziner, J., Simonsick, E. M., Kashner, T. M., & Hebel, J. R. (1988). Participant proxy response comparability on measures of patient health and functional status. Journal of Clinical Epidemiology, 41(11), 1065-1074.
Malec, J. F. (2001). Impact of comprehensive day treatment on societal participation for persons with acquired brain injury. Archives of Physical Medicine and Rehabilitation, 82, 885-895. Marsh, N. V., Kersel, D. A., Havill, J. H., & Sleigh, J. W. (1998). Caregiver burden at 6 months following severe traumatic brain injury. Brain Injury, 12(3), 225-238. Marsh, N. V., Kersel, D. A., Havill, J. H., & Sleigh, J. W. (2002). Caregiver burden during the year following severe traumatic brain injury. Journal of Clinical and Experimental Neuropsychology, 24(4), 434-447. Mauss-Clum, N., & Ryan, M. (1981). Brain injury and the family. Journal of Neurosurgical Nursing, 13, 165-169. May, T. (2001). Social research: Issues, methods and process (3rd ed.). Maidenhead: Open University Press. McAuley, I., & Menadue, J. (2007). A health policy for Australia: Reclaiming universal health care. Sydney, NSW: Centre for Policy Development. McColl, M. A., Davies, D., Carlson, P., Johnston, J., Harrick, L., Minnes, P., et al. (1999). Transitions to independent living after ABI. Brain Injury, 13(5), 311-330. McIlvoy, L. H., Spain, D. A., Raque, G. H., Vitaz, T., Boaz, P. W., & Meyer, K. (2001). Successful incorporation of the severe head injury guidelines into a phased-outcome clinical pathway. Journal of Neuroscience Nursing, 33(2), 72-78. McKinlay, W., Brooks, D. N., Bond, M. R., Martinage, D. P., & Marshall, M. M. (1981). The short- term outcome of severe blunt head injury as reported by relatives of the injured persons. Journal of Neurology, Neurosurgery, and Psychiatry 44, 527-533. McNaughton, H. (2004). Traumatic brain injury rehabilitation in New Zealand: Current practice review. Wellington, NZ: Medical Research Institute of New Zealand. Miles, M., & Huberman, A. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage Publications. Miller, I. J., Epstein, N. B., & Baldwin, L. M. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9, 171-180. Minichiello, V., Aroni, R., Timewell, E., Alexander, L. (1995). In-depth interviewing: Principles, techniques, analysis (2nd ed. ed.). South Melbourne: Longman Australia. Minichiello, V., Fulton, G., & Sullivan, G. (1999). Posing qualitative research questions. In V. Minichiello, G. Sullivan, K. Greenwood & R. Axford (Eds.), Handbook for research methods in health sciences (pp. 35-56). Sydney: Pearson Education Australia. Minichiello, V., Madison, J., Hays, T., Courtney, M., & St John, W. (1999). Qualitative interviews. In V. Minichiello, G. Sullivan, K. Greenwood & R. Axford (Eds.), Handbook for research methods in health sciences. Sydney: Addison Wesley Longman Australia. Minichiello, V., Sullivan, G., Greenwood, K., & Axford, R. (Eds.). (1999). Handbook of Research Methods in Health Sciences. Sydney: Addison Wesley Longman. Morey, L. C. (1991). Personality assessment inventory: Professional manual. Odessa, FL: Psychological Assessment Resources. Morse, J. M. (1995). Appendix I: The qualitative proposal. In J. M. Morse & P. A. Field (Eds.), Qualitative research methods health professionals (2nd ed.). Thousand Oaks, CA: SAGE Publications. Motor Accident Authority NSW. (2008). Guidelines for mild traumatic brain injury following closed head injury. Sydney.
Muir Giles, G. (1994). The status of brain injury rehabilitation. The American Journal of Occupational Therapy, 48(3), 199-205. Murphy, J. (2004). Care of the patient with traumatic brain injury: Urban versus rural challenges. Topics in Emergency Medicine, 26(3), 231-236. Murray, H. M., Maslany, G. W., & Jeffery, B. (2006). Assessment of family needs following acquired brain injury in Saskatchewan Brain Injury, 20(6), 575-585. Muus, K., Cogan, M., Offutt, S., & Medalen, R. (2006). Perceived barriers to accessing health and social services among individuals with traumatic brain injury. Journal of Head Trauma Rehabilitation, 21(5), 431-431. Nabors, N., Seacat, J., & Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16(12), 1039-1050. National Institute for Clinical Excellence. (2007). Head injury: Triage, assessment, investigation and early management of head injury in children and adults. London, UK: National Institute for Health and Clinical Excellence. National Rural Health Policy Forum. (1999). Health horizons: A framework for improving the health of rural, regional and remote Australians 1999-2003. Retrieved April 18, 2005, from http://www.ruralhealth.org.au/nrhpublic.html. National Trauma Research Institute. (2009). National Trauma Research Institute. Retrieved June 7, 2009, from http://www.ntri.com.au.html. Nelson, L., Satz, P., & D'Elia, L. F. (1994). Neuropsychology behaviour and effect profile. Palo Alto, CA: Mind Garden. Nelson, W. (2007). Ethics of patient preferences. Healthcare Executive, 22(5), 34-37. New South Government. (2007). Future directions for health in New South Wales - Towards 2025. Gladesville, NSW: New South Wales Department of Health. New South Wales Health. (2009a). Program of appliances for disabled people. Retrieved June 11, 2009, from http://www.health.nsw.gov.au/policies/pd/2005/PD2005_563.html. New South Wales Health. (2009b). Transport for health. Retrieved June 11, 2009, from http://www.health.nsw.gov.au/initiatives/iptaas.html. New Zealand Guidelines Group. (2006). Traumatic Brain Injury: Diagnosis, Acute Management and Rehabilitation. Wellington: Medical Research Institute of New Zealand. New Zealand Guidelines Group, & Accident Compensation Corporation. (2004). Traumatic Brain Injury Rehabilitation in New Zealand: Current Practice Review. New Zealand: Medical Research Institute of New Zealand. Newberry, L. (2001). A new direction? A follow up study. Monash University: Acquired Brain Injury in Gippsland. Nolan, S. (2005). Traumatic brain injury: A review. Critical Care Nursing Quarterly, 28(2), 188- 194. Novack, T. A., Bush, B. A., Meythaler, J. M., & Canupp, K. (2001). Outcome after traumatic brain injury: Pathway analysis of contributions to pre-morbid, injury severity, and recovery variables. Archives of Physical Medicine and Rehabilitation, 82, 300-305. Novaco, R. (1975). Anger control: The development and evaluation of an experimental measure. Lexington, MA: Lexington Brooks. O'Connor, P. (2002). Hospitalisation due to traumatic brain injury, Australia 1997-98 (No. INJCAT 43) Adelaide: Australian Institute of Health and Welfare.
Oddy, M., Humphrey, M., & Uttley, D. (1978). Stresses upon relatives of head-injured patients. British Journal of Psychiatry, 133, 507-513. Pacific Solutions. (2008). Research transcription. Retrieved March 9, 2009, from http://www.pacificsolutions.com.au/about-us.php.html. Panting, A., & Merry, P. H. (1972). The long-term rehabilitation of severe head injury with particular reference to the need for social and medical support for the patient's family. Rehabilitation Psychology, 38, 33-37. Papastrat, L. A. (1992). Outcome and value following brain injury: A financial providers perspective. Journal of Head Trauma Rehabilitation, 7, 11-23. Penchansky, R., & William Thomas, J. (1981). The concept of access: Definition and relationship to consumer satisfaction. Medical Care, XIX(2), 127-140. Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of traumatic brain injury on the family: A critical review. Rehabilitation Psychology, 44, 6-35. Petty, G., Rapley, M., & Bramstom, P. (2002). Neighbourhood and community experience, and the quality of life of rural adolescents with and without an intellectual disability. Journal of Intellectual and Developmental Disability, 27(2), 106-116. Ponsford, J., & Olver, J. (1999). Outcome measurement in an inpatient and outpatient traumatic brain injury rehabilitation programme. Neuropsychological Rehabilitation, 9(3-4), 517-534. Ponsford, J., Olver, J., Ponsford, M., & Nelms, R. (2003). Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury, 17(6), 453-468. Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). Upper Saddle River, New Jersey: Prentice Hall. Prigatano, G. P., & Fordyce, D. J. (1986). Cognitive dysfunction and psychosocial adjustment after brain injury. In G. P. Prigatano, D. J. Fordyce, H. K. Zeiner, J. R. Rouceche, M. Pepping & B. C. Woods (Eds.), Neuropsychological rehabilitation after brain injury (pp. 96-118). Baltimore, MD: Johns Hopkins University Press. Radloff, L. S. (1977). The CES-D scale: A self report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. Rankin, N., Newell, S., Sanson-Fisher, R., & Girgus, A. (2000). Consumer participation in the development of psychosocial clinical practice guidelines: Opinions of women with breast cancer. European Journal of Cancer Care, 9, 97-104. Rao, J. N., Myers, P., Smith, B. S., & B.A., A. (1995). Ensuring that guidelines are effective: Pilot of patient held guidelines is under way. British Medical Journal, 311(7011), 1023-1023. Rappaport, M., Hall, K. M., Hopkins, K., & Belleza, T. (1982). Disability rating scale for severe head trauma: Coma to community. Archives of Physical Medicine and Rehabilitation, 63, 118-123. Rejas, J., Ribera, M. V., Ruiz, M., & Masrramón, X. (2007). Psychometric properties of the MOS (Medical Outcomes Study) Sleep Scale in patients with neuropathic pain. European Journal of Pain, 11(3), 329-340. Richardson, J. V. (2009). Open versus closed ended questions. Retrieved February 9, 2009, from http://polaris.gseis.ucla.edu/jrichardson/dis220/openclosed.html. Rose, J.M. (2005). Continuum of care model for managing mild traumatic brain injury in a workers' compensation context: A description of the model and its development. Brain Injury, 19 (1), 39-53.
Rosenberg, M. (1989). Society and the adolescent self-image. Middletown, CT: Wesleyan University Press. Rothman, M. L., Hedrick, S. C., Bulcroft, K. A., Kickam, D. H., & Rubenstein, L. Z. (1991). The validity of proxy-generated scores as measures of patient health status. Medical Care, 29(2), 115-124. Sample, P. L., & Darragh, A. R. (1998). Perceptions of care access: The experience of rural and urban women following brain injury. Brain Injury, 12(10), 855-874. Sample, P. L., Tomter, H., & Johns, N. (2007). "The left hand does not know what the right hand is doing": Rural and urban cultures of care for persons with traumatic brain injuries. Substance Use & Misuse, 42, 705-527. Sander, A. M., High, W. M., Hannay, H. J., & Sherer, M. (1997). Predictors of psychological health in carergivers of patients with closed head injury. Brain Injury, 11, 237-249. Sarason, I. J., Levine, H. M., & Basham, R. B. (1983). Assessing social support: The social support questionnaire. Journal of Personality and Social Psychology, 44, 127-139. Sarkova, M., Nagyova, I., Katreniakova, Z., Sleskova, M., Orosova, O., Middel, B., et al. (2006). General health questionnaire - 12: The appropriateness of use with early adolescents. European Journal of Public Health, 16, 128-128. Satz, P., Forney, D. L., Zaucha, K., Asarnow, R. R., Light, R., McCleary, C., et al. (1998). Depression, cognition and functional correlates of recovery outcome after traumatic brain injury. Brain Injury, 12(7), 537-553. Sbordone, R. J., Seyranian, G. D., & Ruff, R. M. (1998). Are the subjective complaints of traumatically brain injured patients reliable? Brain Injury, 12(6), 505-515. Schootman, M., & Fourtes, L. (1999). Functional status following traumatic brain injuries: Population-based rural-urban differences. Brain injury, 13(12), 995-1004. Schootman, M., & Fourtes, L. (2000). Ambulatory care for traumatic brain injuries in the US, 1995- 1997. Brain Injury, 14(4), 373-381. Schwandt, T. A. (2000). Three epistemological stances for qualitative inquiry. In Y. K. Denzin & M. Lincoln (Eds.), Handbook of qualitative research (pp. 189-213). Thousand Oaks, CA: Sage Publications. Seale, G. S., Caroselli, J. S., High, W. M., Becker, C. L., Neese, L. E., & Scheibel, R. S. (2002). Use of the community integration questionnaire to characterise changes in functioning for individuals with traumatic brain injury who participated in a post-acute rehabilitation programme. Brain Injury, 16, 955-967. Seligman, M. (1993). Fall into helplessness. Psychology Today, Spring. Semlyen, J. K., Summers, S. J., & Barnes, M. P. (1998). Traumatic brain injury: Efficacy of multidisciplinary rehabilitation. Archives of Physical Medicine and Rehabilitation, 79(6), 678-683. Shereer, M., Bergloff, P., Levin, E., High, W. M., Oden, K. E., & Nick, T. G. (1998). Impaired awareness and employment outcome after traumatic brain injury. The Journal of Head Trauma Rehabilitation, 13(5), 52-61. Sherwood, P. R., Given, C. W., Given, B. A., & Von Eye, A. (2005). Caregiver burden and depressive symptoms: Analysis of common outcomes in caregivers of elderly patients. Journal of Aging and Health, 17(2), 125-147. Simpson, G., Mohr, R., & Redman, A. (2000). Cultural variation in the understanding of traumatic brain injury and brain injury rehabilitation. Brain Injury, 14(2), 125-140.
Sinnakaruppan, I., Downey, B., & Morrison, S. (2005). Head injury and family carers: A pilot study to investigate an innovative community-based educational programme for family carers and patients. Brain Injury, 19(4), 283-308. Sinnakaruppan, I., & Williams, D. M. (2001). Family carers and the adult head-injured: A critical review of carers' needs. Brain Injury, 15(8), 653-672. Snaith, R. P., Bridge, G. W., & Hamilton, M. (1976). The Leeds scale for the self assessment of anxiety and depression. London: Psychological Test Publications. Sneeuw, K. C. A., Aaronson, N. K., Osoba, D., Muller, M. J., & al., e. (1997). The use of significant others as proxy raters of the quality of life of patients with brain cancer. Medical Care, 35(5), 490-506. Spain, D. A., McIlvoy, L. H., Fix, S. E., Carrillo, E. H., Boaz, P. W., Harpring, J. E., et al. (1998). Effect of a clinical pathway for severe traumatic brain injury on resource utilization. The Journal of Trauma: Injury, Infection and Critical Care, 45(1), 101-105. Sprangers, M. A. G., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45(7), 743-760. Squire, L. R. (1986). Mechanisms of memory. Science, 232, 1612-1619. State Government Victoria Australia. (2009a). Geelong. Retrieved June 12, 2009, from http://www.liveinvictoria.vic.gov.au/living-in-victoria/melbourne-and-regional- victoria/south-west-victoria/geelong.html. State Government Victoria Australia. (2009b). Traralgon. Retrieved June 12, 2009, from http://www.liveinvictoria.vic.gov.au/living-in-victoria/melbourne-and-regional- victoria/south-east-victoria/traralgon.html. Stebbins, P., & Leung, P. (1998). Changing family needs after brain injury. Journal of Rehabilitation, 64, 15-22. Stewart-Scott, A. M., & Douglas, J. M. (1998). Educational outcome for secondary and postsecondary students following traumatic brain injury. Brain Injury, 12(4), 317-331. Strasser, R. P., Harvey, D., & Burley, M. (1994). The health needs of small rural communities. Australian Journal of Rural Health, 2(7-13). Streeper, E. (1991). Allied Health Professional Training. Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland. Stringer, K. (1999). Study into the Accommodation Needs for Young People Requiring Nursing Homes. Melbourne: Melbourne City Mission. Stroke Foundation. (2007). Clinical guidelines. Retrieved May 29, 2009, from http://www.strokefoundation.com.au/clinical-guidelines.html. Swaine, B. R., Dutil, E., Demers, L., & Gervais, M. (2003). Evaluating clients' perspectives of the quality of head injury rehabilitation services: Development and validation of a questionnaire. Brain Injury, 17(7), 575-587. Teasdale, G., & Jennett, B. (1974). Assessment of coma and impaired consciousness: A practical scale. Lancet, 2, 81-84. Tepper, S., Beatty, P., & DeJong. (1996). Outcomes in TBI: Self report versus report of significant others. Brain Injury, 10(8), 575-581. The Office of the Privacy Commissioner. (2006). National privacy principles. Retrieved March 9, 2009. from http://www.privacy.gov.au/publications/npps01_print.html.
Thompson, N. (Ed.). (2002). Loss and grief: A guide for human services practitioners. New York: Palgrave. Thurman, D. J., Alverson, C., Dunn, K. A., Guerrero, M. S., & Sniezek, J. E. (1999). Traumatic brain injury in the United States: A public health perspective. The Journal of Head Trauma Rehabilitation, 14(6), 602-615. Tooth, L., McKenna, K., Strong, J., Ottenbacher, K., Connell, J., & Cleary, M. (2001). Rehabilitation outcomes for brain injured patients in Australia: Functional status, length of stay and discharge destination. Brain Injury, 15(7), 613-631. Traffic Accident Commission. (2003). Client information. Retrieved July 17 2008, from http://www.tac.vic.gov.au/jsp/content/NavigationController.do?areaID=26.html. Traffic Accident Commission. (2008, 6/06/08). Case management. Retrieved March 16, 2009, from http://www.tac.vic.gov.au/jsp/content/NavigationController.do?areaID=22&tierID=1&navID =DEFBB46F7F00000101A5D193EB2FDF2C&navLink=null&pageID=804.html. Trevena, L., Cameron, I. D., & Porwal, M. (2004). Clinical practice guidelines for the care of people living with traumatic brain injury in the community. Sydney: The University of Sydney. Tuel, S. M., Presty, S. K., Meythaler, J. M., Heinemann, A. W., & Katz, R. T. (1992). Functional improvement in severe head injury after readmission for rehabilitation. Brain Injury, 6(4), 337-343. Turkstra, L. S., & Kennedy, M. R. T. (2008). Traumatic brain injury and cognitive rehabilitation: Current approaches to research, reimbursement, and clinical treatment. The ASHA Leader, July, 10-13. Turner-Stokes, L., Disler, P. B., Nair, A., & Wade, D. T. (2005). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age (review). The Cochrane Collaboration, 4, 1-29. van den Broek, M. D. (2005). Why does neurorehabilitation fail? The Journal of Head Trauma Rehabilitation, 20(5), 464-474. Vickery, C. D., Gontkovsky, S. T., & Caroselli, J. S. (2005). Self-concept and quality of life following acquired brain injury: A pilot investigation. Brain Injury, 19(9), 657-665. Wecshler, D. (1997). Adult intelligence scale (3rd ed.). San Antonio: Harcourt Brace & Co. Welch, N. (2000). Toward an understanding of the determinants of rural health. Retrieved May 30, 2009, from http://nrha.ruralhealth.org.au/cms/uploads/publications/03_welch_00.pdf.html. Wells, R., Dywan, J., & Dumas, J. (2005). Life satisfaction and distress in family caregivers as related to specific behavioural changes after traumatic brain injury. Brain Injury, 19(13), 1105-1115. Whitehead, M. (1990). The concepts and principals of equity and health. . Copenhagen, Denmark: World Health Organization. Whiteneck, G. G., Charlifue, S. W., Gerhart, K. A., Overholser, J. D., & Richardson, G. N. (1992). Quantifying handicap: A new measure of long-term rehabilitation outcomes. Archives of Physical Medicine and Rehabilitation, 73(6), 519-526. Whiteneck, G. G., Gerhard, K. A., & Cusick, C. P. (2004). Identifying environmental factors that influence outcomes of people with traumatic brain injury. Journal of Head Trauma Rehabilitation, 19, 191-204. Wilson, B., Cockburn, J., & Baddeley, A. (1991). The Rivermead behavioural memory test. Suffolk, UK: Thames Valley Test Company.
Wilson, B. A., Alderman, N., Burgess, P. W., Emslie, B., & Evans, J. J. (1996). The behavioural assessment of dysexecutive syndrome. Suffolk, UK: Thames Valley Test Company. Wilson, L., Lincoln, M., & Onslow, M. (2002). Availability, access, and quality of care: Inequalities in rural speech pathology services for children and a model for redress. Advances in Speech-Language Pathology, 4(1), 9-22. World Health Organization. (2001). ICF: International classification of functioning, disability and health. Geneva: World Health Organization. World Health Organization. (2002). Towards a common language for functioning, disability and health: ICF. Geneva: World Health Organization. World Health Organization, & Commission on Social Determinants of Health. (2008). Closing the gap in a generation: Health equity through action on social determinates of health. Switzerland: Commission on Social Determinants of Health. Ylvisaker, M., Coelho, C. A., Kennedy, M. R. T., Soholbery, M. M., Turkstra, L., Avery, J., et al. (2002). Reflections on evidence-based practice and rational clinical decision making. Journal of Medical Speech-Language Pathology, 10(3), xxv-xxxiii. Youse, K. M., Le, K. N., Cannizzaro, M. Z., & Coelho, C. A. (2002). Traumatic brain injury: A primer for professionals. American Speech and Hearing Association, April. Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361-371.
APPENDICES
Appendix A: Tools Used in TBI Outcome Studies
Measure Description of tool Critique of tool Post-Traumatic Duration of PTA is the time following coma Poor performance on the PTA Amnesia during which a person with TBI is unable to scale could be due to other factors store new information and experiences in including reduced client memory. The Westmead PTA scale is a motivation, communication standardised, prospective measure of PTA. disorders or chronic amnesia. The scale consists of 7 questions assessing The use of the PTA scale requires orientation and 5 questions addressing clients to remain in hospital for at memory. least 4 days after they regain consciousness. PTA duration as a measure of severity of TBI: - less than 5 minutes = very mild - 5-60 minutes = mild - 1-24 hours = moderate - 1-7 days = severe - 1-4 weeks = very severe - More than 4 weeks = extremely severe Glasgow Coma Devised by Teasdale and Jennett (1974), the The GCS has been shown to best Scale GCS was created to bring uniformity to how predict clients’ recovery at the levels of consciousness were measured. The two ends of the continuum. The GCS provides a consistent way of rating a GCS has not been shown to patient’s level of consciousness based on eye reliably predict the recovery of opening, verbal responses and motor responses adults with TBI who fall in the observed during the immediate post-injury moderate range (Shatz & Chute, period. GCS total scores can range from 3 to 1995). 15. Scores of 3-8 denote a severe TBI, scores 9-12 denote moderate TBI and scores 13-15 denote mild TBI.
Glasgow Devised by Jennet and Bond (1975), the GOS More sensitive than the GCS in Outcome Scale was proposed as a standardised procedure for predicting small yet important characterising recovery in TBI. The GOS has 5 difference in outcome. outcome categories: dead, vegetative, severely The GOS has an extended version disabled, moderately disabled and good which has expanded the outcome recovery. categories from 5 to 8.
Galveston Measure of post-traumatic amnesia. The Orientation is weighted more Orientation GOAT was designed to track recovery of heavily then memory and Amnesia Test orientation and memory of TBI clients amnesia. The assessment also (GOAT) emerging from coma. The GOAT consists of requires spoken responses, and 10 questions that test a client’s memory of therefore may overestimate the biographical information and events severity of impairment for clients immediately preceding or following their TBI, with communication impairments. in addition to their orientation to place and time.
Measure Description of tool Critique of tool Community Developed by Willer to assess community Limited normative data exist Integration integration. It encompasses the views of both which determine what normal Questionnaire healthcare professionals and consumers. It can community integration is. Few be administered in person or over the phone questions reflect integration. with the person with TBI and their proxy. The questionnaire consists of 15 items across three domains: home integration, social integration and productive activities. The scoring of the tool is based on the frequency of behaviours and whether they were completed with the assistance of others. Disability Rappoport (1982) created the DRS as a The DRS is insensitive to change Ratings standardised procedure to measure recovery in adults with mild TBI. It also Scale following TBI. The DRS rates the level of does not take into account function of an adult with TBI in eight areas: cognitive communication eye opening, verbal response, motor response, domains. feeding, toileting, grooming, dependence on others and employability. Possible DRS scores range from 0 to 29.
Functional The FIM Is the most widely used measure of Contains few cognitive, Independence functional ability in physical medicine and behavioural and communication Measure rehabilitation. It rates performance on 18 tasks related functional items. related to daily living skills and is Is sensitive to changes over the implemented by a clinical staff member course of an inpatient familiar with the individual. Scores range from rehabilitation stay only. one (total assistance needed) to seven (complete independence). FIM scores consist of cognitive and motor items.
Mayo-Portland Tool aimed to evaluate the outcome of people Adaptability with ABI in the post-acute stages. Items within Inventory the tool represent a range of physical, cognitive, emotional, behavioural and social problems post-ABI. Can be completed both by healthcare professionals and consumers
Goal Tool designed to assist goal setting. Healthcare Assumes that outcomes from Attainment professionals and consumers jointly set goals can be determined in Scale specific goals to be achieved within a specific advance. time frame. These goals also have A subjective tool. predetermined outcomes which are used to provide evidence that the goal has been achieved.
Appendix B: Survey One - Investigating your experiences of healthcare: A survey for people
who have a traumatic brain injury.
Appendix C: Survey two - Investigating your experiences of healthcare: A survey for family
members or significant others of a person with a traumatic brain injury.
Appendix D: Information sheet
Research about head You and a family member injuries. or significant other have been invited to take part in a research project called: ‘Investigating your experiences of healthcare after traumatic brain injury (TBI)’. Anna O’Callaghan is a My name is Anna speech pathologist and O’Callaghan and I am a research student. PhD student at Charles Sturt University and the in this study. Aim is to discover your The aim of this study is to experiences when uncover the experiences of accessing healthcare. people with TBI and their families when accessing health services in Victoria. This information will then be used to inform policy makers, health service providers, and funding bodies about your experiences when accessing rehabilitative care. You were sent this letter You were sent this survey by your Melbourne by the Melbourne hospital hospital. responsible for your acute medical care. Anna does not have access to your names, address or any other personal information. You don’t have to You are not obliged to complete this survey if you complete these surveys and don’t want to. your healthcare will not be compromised if you decide not to take part. Two surveys: Two surveys are enclosed • One for the person in this envelope. One is to with TBI. be completed by the person • One for a family with TBI this survey is member. printed on blue paper. The other, printed on pink paper, is to be completed by a family member or close friend.
Please complete this When completing the survey with help from enclosed survey, it may be your family, partner or difficult to remember some carer aspects of your experiences. Some of the questions in this questionnaire may also be difficult to read. In these cases and any other feel free to ask family and friends to help. It takes 20-60 minutes The surveys should take between 20-60 minutes to Please take breaks complete. Please take a break whenever you get tired and start again when you are rested. Confidential Your answers to the surveys will be kept Private confidential. No identifying information will be used when analysing or reporting the results of this study. If you have more to tell If you and your family Anna about your want to continue to experiences and are participate in this research interested in having an after completing the interview, please write questionnaire, record your your: name, address and • Name, telephone number in the • Address and last question and Anna will • Telephone number contact you to tell your on the last question of the more. survey. You can talk about this [Insert acute trauma ethics The [insert name of acute research with someone committees details] trauma hospital] and else: Charles Sturt University’s OR Ethics in Human Research Committees have approved The Executive Officer this project. Ethics in Human Research Committee You have the right to ask Charles Sturt University them questions or complain Private Mail 29 to them if you are Bathurst NSW 2795 concerned about anything. Phone: (02) 6338 4628 Fax: (02) 6338 4194
If you want to take part in Your return of this survey this research complete the will be taken as evidence survey. of your informed consent to participate.
Once completed, please If you consent to take part post it in the reply paid in this research, please envelope. complete the attached questionnaire, place it in the reply paid envelope and return it within two weeks of receiving it. Thank you Thank you for taking the time to read this sheet and participate in this research. As you know access to appropriate care following TBI is essential, not only for your survival but also to meet your rehabilitative needs.
Please keep this information sheet for future reference.
Anna O’Callaghan Speech Pathology PhD Student School of Community Health Charles Sturt University
Ph: (02) 6051 6793 Email: [email protected]
Associate Professor Lindy McAllister Research Supervisor School of Community Health Charles Sturt University
Ph: (02) 6051 6750 Email: [email protected]
Dr Linda Wilson Research Supervisor School of Community Health Charles Sturt University
Appendix E: Follow-up information sheet
Four weeks ago you got a Four weeks ago, you and your survey family were sent a survey seeking information about your experiences when accessing health services following your head injury. If you filled out the survey, If you have completed the Thank you! survey and returned it please accept our sincere thanks. If If not, please complete the not, it would be greatly survey and return it as soon appreciated if you could as possible. Thank you! complete this survey and return it as soon as possible. Two surveys: Two surveys are enclosed in • One for the person this envelope. One is to be with TBI. completed by the person with • One for a family TBI this survey is printed on member. blue paper. The other, printed on pink paper, is to be completed by a family member or close friend. Sent this survey by your This survey was sent to you Melbourne hospital. by your acute Melbourne hospital.
You don’t have to complete You are not obliged to this survey if you don’t want complete these surveys and to. your healthcare will not be compromised if you decide not to take part. Your story can help us to If you do decided to complete plan better health services the survey we are especially for people with head grateful for your help, because injuries it is only by asking people like you to share your experiences that we will be able to plan for improved health services in traumatic brain injury rehabilitation. Any questions, please call If you have any questions the number below about the surveys or the research, please do not hesitate to contact us on the numbers provided over the page.
I can talk about this research [Insert acute trauma ethics The [insert name of acute with someone else: committees details] trauma hospital] and Charles Sturt University’s Ethics in OR Human Research Committees have approved this project. The Executive Officer Ethics in Human Research You have the right to ask them Committee questions or complain to them Charles Sturt University if you are concerned about Private Mail 29 anything. Bathurst NSW 2795 Phone: (02) 6338 4628 Fax: (02) 6338 4194
Many thanks,
Anna O’Callaghan Speech Pathology PhD Student School of Community Health Charles Sturt University
Ph: (02) 6051 6793 Email: [email protected]
Associate Professor Lindy McAllister Research Supervisor School of Community Health Charles Sturt University
Ph: (02) 6051 6750 Email: [email protected]
Dr Linda Wilson Research Supervisor School of Community Health Charles Sturt University
Appendix F: Interview topic guide
An investigation of the continuum of care experienced by people with traumatic brain injuries and their families in Victoria.
Anna Mary O’Callaghan
A topic guide
Can you tell me about your health journey since you head injury?
• Acute treatment
• Inpatient rehabilitation
• Discharge
• Outpatient rehabilitation
• Where you are now
What was done well/poorly?
What could have been done better? How?
Do you think living in a rural area meant a difference to your care/experience?
Do you think the healthcare funding model you fell under made a difference to your care/experience?
Appendix G: Information sheet and consent form
Research about my head We have been invited to take injury. part in a research project: ‘An investigation of the continuum of care as experienced by people with traumatic brain injuries (TBI) and their families in Victoria.’ Anna O’Callaghan is a Anna O’Callaghan is a researcher and student. researcher completing her doctorate at Charles Sturt University.
Anna has explained the Anna has explained to me research to me. what the research is about.
Anna will ask me about Anna would like to ask me the health services I some questions about the received after I had my health services accessed by head injury. the person with TBI after they got their head injury. She also wants to know about the current needs and barriers they may have faced when accessing health services. A person with TBI and A person with TBI and their their family member, family member, carer or carer or friend will be friend will be involved in the involved. interviews.
1 x 60-90 minute The interview will take one session of about an hour to an hour and a half.
Tape recorded Conversations with Anna will be audio recorded
I consent/do not (cross I consent/do not consent one out) consent to tape (cross one out) to audio recording recording my conversations with Anna.
I can: You can rest if you need to or Rest stop the session if you want.
Ask questions You can ask questions.
Stop You don’t have to answer if you don’t want to.
Withdraw from the study You can pull out of the study at any time if you want, without causing problems with your future care.
Confidential All your personal information will be kept confidential. My name and details will Anna will not reveal your not be used name or details to anyone. All identifying information will be altered or removed in publications and reports. Tapes will be kept secure Audio recordings and transcripts will be kept secure at the university.
I can talk about this [Insert acute trauma ethics The [insert name of acute research to someone else committees details] trauma hospital] and Charles Sturt University’s Ethics in OR Human Research Committees have approved this project. The Executive Officer Ethics in Human Research You have the right to ask Committee them questions or complain to Charles Sturt University them if you are concerned Private Mail 29 about anything. Bathurst NSW 2795 Phone: (02) 6338 4628 Fax: (02) 6338 4194 If I am unable to sign my If for any reason the person guardian can sign for me. with TBI is unable to sign their consent to participate in interviewing their guardian can sign on their behalf, after reading this information sheet and speaking to Anna.
CONSENT FOR PERSON WITH TRAUMATIC BRAIN INJURY I am willing to participate in this research
Signed: ______
Date: ______
Person authorized to sign on behalf of family/friend with TBI OR As guardian I consent for ______to participate in this interview
Signed: ______
Date: ______
CONSENT FOR FAMILY MEMBER, CARER OR FRIEND I am willing to participate in this research
Signed: ______
Date: ______
Researchers:
Anna O’Callaghan Speech Pathology PhD Student School of Community Health Charles Sturt University
Ph: (02) 6051 6793 Email: [email protected]
Associate Professor Lindy McAllister & Dr Linda Wilson Research Supervisor School of Community Health Charles Sturt University
Ph: (02) 6051 6750 Email: [email protected]
Appendix H: NVivo codes for questionnaire data
Questionnaire one: ‘Investigating your experiences of healthcare – A survey for people who have a traumatic brain injury.’
Tree nodes Free nodes categorised within tree nodes
Movement through stages of continuum of care Transitional planning Institutionalisation Readiness and timeliness Uncertainty
Mention of care throughout healthcare journey Care in acute Rehabilitation services Discharge services
Want to return to normal Want to get on with life Want to be normal Wish to return to work Want to go home
Role of family, friends and animals Family Friends Animals
Need for information Information Prognosis
Wish for or need for support Counselling Support
Mention of staff throughout healthcare journey Medical services Nursing care Humour
Additional services required Staff shortages Waiting lists Additional services
Care coordination Continuation of care Case management
Awareness of and eligibility for services Knowledge of services Choice of services
Can’t remember Memory Post traumatic amnesia
Communication Communication
Consideration of person with TBI Being listened to Honesty Respect
Hospital administration Funding Red tape
Impact of staff Staff competency Impact of staff on outcome Consideration of physical over cognitive Staff acknowledging progress
Ability to cope with TBI impairment Coping strategy Personality Perception of mental illness
Improvement for autonomy Empowerment Independence Improvement Awareness and insight development
Imposed restrictions Discharge restrictions General restrictions
Infrastructure Infrastructure
Location Consideration of location
Need to push for services Advocacy Self management
Outcome following TBI Outcome Saved life Lucky
Negative disruptions to transitions Difficulty transitioning from Intensive Care Unit to ward No bed Inappropriate transfer Hasty discharge
Reason Fault TBI severity
Questionnaire two: ‘Investigating your experiences of healthcare – A survey for family members or significant others of a person who have a traumatic brain injury.’ Tree nodes Free nodes categorised within tree nodes
Time Time
Transitioning difficulties in acute Emergency to ward transition Intensive care unit to ward transition Being watched during acute
Transition planning Hasty discharge Transition planning
Needs and demands placed on carers Demand on carers Support Coping Counselling Family involvement Self management
Need for information Information Prognosis
Funding Funding
Involvement in goal setting Ways goals were set Examples of goals set
Anxiety related to uncertainty Uncertainty Possibility of setbacks
Shortages of services Staff availability Staff numbers Waiting lists
Respect for rights Client rights Family rights
Need for empathy Compassion Listening Honesty
Infrastructure Infrastructure
Communication Communication
Impact of location Location Distance from home Restricted access
Concerns over staff knowledge Staff competency Ignorance Consideration of physical versus cognitive therapy
Client outcome related comments Relief Comparison to outcome Outcome Saved life Wellness Severity
Changes person due to TBI sequelae Client with TBI symptoms New person Perception of mental illness Depression
Mention of staff throughout healthcare journey Staff in acute Staff in inpatient rehabilitation Staff in outpatient rehabilitation
Mention of care throughout healthcare journey Care in acute Care in inpatient rehabilitation Services
Appendix I: Coding of participant transcripts
Theme 2 – Support: She’s the rock there. She’s the shoulder I need all the time.
Examples of text coded within dimension 1: Need for support
I think the counselling aspect and well not so much counselling but someone to sit down and say,
“now look, we’ve been here for you”. From what we know of people who’ve gone through these sorts of accidents, this is the sort of thing that’s going to happen. (1)
No, just it was a physical help from them, but I needed a medical help not physical help, well both of them at that stage but I needed real medical help who can really help me through like I told you it is this year it is going to be six years after my surgery and I still live in the fear. I had nightmares, I had dreams that I’m dying, my husband had to wake me up because in my dream I saw myself dead and I was crying so deeply so he used to wake me up to, you know, from my death or the fear of death, you know, I dreamed I died and so oh my God not again. So he went through a hard time and he needed help as well. (3)
Well it was very difficult because I was just on my own doing that you know. Well I had – no, I had the Caulfield Hospital used to send somebody to come out and talk to me. Initially I think it was once a week and then it got – and that was great, it was while Kate was out with her – out walking or whatever else she was doing with her carer. And they would come and she would come and spend an hour with me and I'd cry and all of that which was terrific, I found that really great. I wish it could have lasted longer really. And I wish I still sometimes had it you know. Because it's very difficult holding on to it all yourself you know. And it's confusing, there's so many things, even now, five years later, so many things that are still related to that, are still having to be done and remembered and changed and you know life – Kate’s father didn’t want to help, he just said you deal with it all. So I found, yeah it was very stressful. But I couldn’t fall apart because there was
nobody else to do it you know. And certainly didn’t want Kate going into care somewhere. So I had to give up work, I had to you know, just do it. (9)
At one stage I rang the Brain Injury Support Group in the regional centre and I said look I need some advice. I said we’ve been told that he’s got a brain injury and again sort of got told well you know if that’s what the doctors have told you then we can’t help you and I just... we had nowhere to go. I’d just sit with the phonebook going through it, going who’s going to help me? Because it’s this whole new territory and when, you know, when you’re working and you’re in control and you’ve got your kids and you’ve got everything and suddenly you’ve got nothing no safety net, it’s just hours sitting in front of the computer and saying who’s going to help me here I don’t know. (10)
Maybe the only thing I would say – and this is maybe where other people with head trauma could help – is your family. While you’re in there in a coma, do you know what I mean? Have someone explain to them, maybe they can’t tell you, because they don’t know, because they don’t know how you’re going to wake up. (11)
Appendix J: Stage two participant validation
Miss A O’Callaghan PhD Candidate Charles Sturt University PO Box 789, ALBURY New South Wales, 2640
Saturday, 23 August 2008
Dear ………………….,
RE: Interview summaries from ‘An investigation of the continuum of care as experienced by people with traumatic brain injuries and their families in Victoria.’
Thank you once again for taking part in an interview for this project. It is only through hearing experiences like yours that we can begin to understand what health services people access, what current needs they have and what barriers they face following head injury.
In a research project like this one, it is important that the researchers develop an accurate understanding of the information shared by participants during their interview. This is done by sending a summary of the interview to participants to check.
This letter includes a two page summary of your interview.
What I need you to do is:
1. Read through the summary of the interview, 2. Confirm that the summary is accurate, and 3. Fill out the summary confirmation sheet and send it back to me in the stamped envelope provided.
If I do not receive the completed summary confirmation sheet I will contact you be phone to check if you have any concerns with the summary attached.
I look forward to receiving your feedback.
Many thanks,
Anna O’Callaghan
‘An investigation of the continuum of care as experienced by people with traumatic brain injuries and their families in Victoria’
Summary confirmation sheet:
Name: ______
Please circle the most appropriate response:
I agree/disagree that the summary sent to me is an accurate summary of the issues I spoke about in my interview.
Please use the space below if you wish to make any comments about your summary:
______
Signed: ______
Date: ______
Appendix K: Other data from both questionnaires
Table 1. Demographics for Adults with TBI: Other Cultural Backgrounds (n = 10)
Other cultures Number Percentage
Croatian 1 10.0
Dutch 1 10.0
Egyptian 1 10.0
Hungarian 2 20.0
Irish 2 20.0
Lebanese 1 10.0
Polish 2 20.0
Table 2. TBI Onset Information Reported by Adults with TBI: Other Causes of TBI (n = 43)
Other causes of TBI Number Percentage
Sporting injury 19 44.2
Acquired brain injury 4 9.3
Object fell on top of participant 2 4.6
Work accident 9 20.9
Hit and run 7 16.3
Self-harm 1 2.3
Can’t categorise 1 2.3
Table 3. Reported Reasons for Lack of Access to Rehabilitation Services: Other Reasons Why No Inpatient Services Were Provided (n = 14)
Other reasons why no inpatient rehabilitation provided Number Percentage
Not offered 6 26.1
Too severe 2 8.7
Team could not decide whether needed 1 4.3
Went home 4 17.4
No funding 1 4.3
Table 4. Reported Reasons for Lack of Access to Rehabilitation Services: Other Reasons Why No Outpatient Services Were Provided (n = 8)
Reasons why no outpatient rehabilitation provided Number Percentage
Can’t remember 1 12.5
Did own rehab 1 12.5
Didn’t need it 3 37.5
No communication between services 1 12.5
Not given options 1 12.5
Waiting on funding 1 12.5
Table 5. Length of Stay in Hospital-based Stages As Reported by Participants with TBI: Other Length of Stay in Acute Hospital (n = 44)
Other length of stay in acute hospital Number Percentage
2 wks – 1 month 19 43.2
Between 1-2 months 17 38.6
Between 2-3 months 4 9.1
Between 3-4 months 3 6.8
Between 6 months and 1 year 1 2.3
Table 6. Services Accessed at Each Stage of the Continuum of Care by Participants with TBI: Other Acute Services (n = 15)
Acute other services requested Number Percentage
Halo fitted 1 6.7
ICU 3 20.2
Radiology 2 13.3
Neurosurgery 1 6.7
Orthopaedic 1 6.7
Orthotist 2 13.3
Plastic surgeon 1 6.7
Psychology 1 6.7
Rehabilitation 1 6.7
Trauma department 1 6.7
Missing data 1 6.7
Table 7. Frequency of Medical Services Accessed by Participants with TBI in Rehabilitation Settings: Other Times Outpatient Medical Services Accessed (n = 6)
Other times medical reviews provided Number Percentage
2nd yearly 1 16.6
3 monthly 2 33.3
fortnightly 2 33.3
ongoing 1 16.6
Table 8. Types of Medical Services People with TBI Reported Accessing As an Outpatient: Other Outpatient Medical Services Accessed (n = 6)
Other medical services accessed Number Percentage
Medical follow-up 1 16.6
Dental 1 16.6
Eye and ear 1 16.6
Psychology 2 33.3
Rehabilitation consultant 2 33.3
Table 9. Frequency of Access by Adults in Rehabilitation to Allied Health Services: Other Inpatient Appointments
Occupational Speech Social work Dietetics Physiotherapy therapy pathology (n = 25) (n = 27) (n = 10) (n = 18) (n = 14) N % N % N % N % N %
Don’t 5 50.0 6 33.3 6 42.9 5 20.0 8 29.6 remember
Once a 1 10.0 1 5.6 0 0.0 2 8.0 1 3.7 fortnight
Monthly 1 10.0 2 11.1 0 0.0 1 4.0 2 7.4
Three times a 1 10.0 0 0.0 0 0.0 0 0.0 1 3.7 week
Can’t 2 20.0 1 5.6 0 0.0 5 20.0 7 25.9 categorise
As needed 0 0.0 1 5.6 0 0.0 4 16.0 3 11.1
3 visits all up 0 0.0 2 11.1 2 14.3 1 4.0 0 0.0
Once 0 0.0 3 16.7 4 28.6 4 16.0 5 18.5
Twice a week 0 0.0 2 11.1 2 14.3 0 0.0 0 0.0
Twice 0 0.0 0 0.0 2 14.3 0 0.0 0 0.0
Quarterly 0 0.0 0 0.0 1 7.1 0 0.0 0 0.0
Table 10. Frequency of Access by Adults in Rehabilitation to Allied Health Services: Other Outpatient Appointments
Physiotherapy Occupational Speech Social work Dietetics
(n = 7) therapy pathology (n = 15) (n = 10) (n = 12) (n = 13) n % n % n % n % N %
Don’t remember 1 14.3 2 16.7 2 15.4 1 6.7 0 0.0
Ongoing 2 28.6 0 0.0 0 0.0 0 0.0 0 0.0
3rd monthly 0 0.0 1 8.3 2 15.4 0 0.0 0 0.0
Three times a week 1 14.3 0 0.0 0 0.0 0 0.0 0 0.0
Can’t categorise 0 0.0 3 25.0 2 15.4 6 40.0 1 10.0
As needed 0 0.0 2 16.7 1 7.7 2 13.3 2 20.0
6 sessions 1 14.3 0 0.0 4 30.8 0 0.0
Once 0 0.0 3 25.0 1 7.7 3 20.0 5 50.0
Twice a week 2 28.6 0 0.0 1 7.7 1 10.0
Twice 0 0.0 1 8.3 1 7.7 2 13.3 1 10.0
Monthly 0 0.0 0 0.0 0 0.0 1 6.7 0 0.0
Table 11. Reported Reasons for Discharge from Inpatient Rehabilitation: Other Reasons (n = 8)
Reasons Number Percentage
Not enough beds 3 37.5
Funding restrictions 2 25.0
Infection cleared 1 12.5
Bad service in rehabilitation hospital 2 25.0
Wanted to go home 2 25.0
Table 12. Reported Feelings Experienced by Participants with TBI on Discharge: Other Feelings (n = 19)
Other feelings Number Percentage
Not sure 5 26.3
Discharged too early 2 10.5
Sad 1 5.3
Relieved 1 5.3
Panicked 1 5.3
Can’t categorise 1 5.3
Nothing 1 5.3
Ready to return to work 1 5.3
Happy 3 15.8
Curious 1 5.3
Confused 2 10.5
Table 13. Sources of Support Reported by Participants with TBI: Other Supports (n = 33)
Other supports accessed Number Percentage
Therapists 12 36.4
Employers/colleagues 3 9.1
Partner 4 12.1
Myself 6 18.2
Not required 7 21.1
Education staff (i.e., school/uni) 1 3.0
Table 14. Mode of Transport Used by People with TBI to Travel to Outpatient Rehabilitation Services: Other Modes of Transport (n = 5)
Other ways to access outpatient services Number Reason
TAC funded transport 4 80.0
Red Cross 1 20.0
Table 15. Funding Models Adults with TBI Reported Their Health Services Accessed to Fund Their Care: Other Funding Models (n = 5)
Other funding models Number Percentage
Overseas insurance company 1 20.0
Disability pension 1 20.0
DVA gold card 1 20.0
Sports insurance 1 20.0
Victims of crime 1 20.0
Table 16. Demographics of Significant Others: Other Cultural Backgrounds (n = 13)
Other cultural backgrounds reported by significant others Number Percentage
Chinese 1 7.7
Croatian 1 7.7
Dutch 2 15.4
German 1 7.7
Irish 2 15.4
Scottish 2 15.4
Hungarian 1 7.7
Indian 1 7.7
Lebanese 1 7.7
Polish 1 7.7
Table 17. Changes in Significant Other Demographics: Other Changes to Marital Status (n = 10)
Other ways marital status changed since onset of family Number Percentage member or friends TBI
Divorced, now in new relationship 1 10.0
Got married 4 40.0
Put pressure on marriage 5 50.0
Table 18. Changes in Significant Other Demographics: Other Changes to Employment Status (n = 12)
Other ways employment status changed since onset of family Number Percentage member’s or friend’s TBI
Became primary carer 3 25.0
Changed career direction 1 8.3
Took extended leave 1 8.3
Took on home duties 1 8.3
On pension 1 8.3
Retired 2 16.7
Work from home 2 16.7
Moved overseas to work 1 8.3
Can’t categorise 1 8.3
Table 19. Significant Others’ Length of Visits with People with TBI Throughout Their Healthcare Journey: Other Lengths of Visits in Acute (n = 3)
Length of significant others’ visits to acute: Other data Number Percentage
Was admitted to hospital at same time 1 33.3
Visited hospital all day, every day for 2 ½ months 1 33.3
Did not leave hospital in case person with TBI died 1 33.3
Table 20. Significant Others’ Access to Accommodation and Travel Support During Acute Phase: Other Sources of Accommodation Support (n = 4)
Other sources of accommodation support in acute stage Number Percentage
Hospital accommodation 3 75.0
Funded by victims of crime 1 25.0
Table 21. Significant Others’ Access to Accommodation and Travel Support During Acute Phase: Other Sources of Travel Support (n = 2)
Other sources of travel support in acute stage Number Percentage
Taxi vouchers funded by police 1 50.0
Travel paid for by victims of crime 1 50.0
Table 22. Significant Others’ Perceived Ability to Access Respite Care for People with TBI: Other Venues for Respite (n = 5)
Other venues for respite Number Percentage
Designated respite house 2 40.0
Respite camp 1 20.0
Parent’s house 1 20.0
Ambulatory care 1 20.0
Table 23. Other Reasons for Significant Other’s Levels of Anxiety on Discharge
Other reasons for anxiety, and examples No. of references made
Impact of location on isolation from services 6 We live a long way from the [acute medical hospital] – or any hospital (124b).
Worry about availability of funds for services 4 The support system put in place for our family member fell apart early. [Compensable fund] contact went on long service leave and no replacement was provided. At rehabilitation the organiser left shortly after plan was made so there was no follow-up. My family member was angry. I felt very let down (207b).
Worry regarding client’s adaptation to transition plan 4 Would [person with TBI] be happy given we were putting him into full time care (47b).
Concerns regarding service shortages 2 Very limited rehab facilities in my country (145b).
Need for greater communication between health services and family 1 It was difficult to speak to doctors over the phone as some didn’t speak very clear English (130b).
Need for improved infrastructure 1 Having no spare bed I had to sleep in a chair. [Name of person with TBI] was so unsteady she knocked on wall when she needed to go to the toilet, so I was overtired and felt ill-equipped to care for her. She slept in my bed (40b).
Respect the rights of clients and their families 1 Patient irrational. We had privacy issues. We missed appointments with neurosurgeon because [name of person with TBI] was unable to remember, we had no knowledge! (73b). Other ways anxiety could be relieved, and examples
Improved planning for service provision taking into account location and travel 3 difficulties We live in the country so travelling to any hospital is an issue (124b).
Provision of appropriately timed services 2 Better education and timely rehab services needed (196b).
Improvement in general level of care provided throughout healthcare 2 Better care and more information needed (53b).
Table 23 cont.
Other reasons for anxiety, and examples No. of references made
Provision of greater empathy for clients and their families 2 More understanding of a country boy caged up in a rehab centre (115b).
Better communication between health services and family 2 More communication from medical staff needed (182b).
Improve staff education in the area of TBI to improve the specialty of their service 1 We were unable to access any support and had to see professionals not familiar with head injury which was of no help (172b).
Improve follow-up and monitoring following discharge from residential 1 rehabilitation services Longer hospital stay and follow-up in rehab centre needed (182b).
Table 24. Significant Others’ Need to Move As a Result of Family Member’s or Friend’s TBI: Other Reasons Why Moved (n = 5)
Other reasons why significant others moved Number Percentage
To be closer to family 1 20.0
Financial reasons 1 20.0
Marriage breakdown 1 20.0
To live closer to the person with TBI 1 20.0
Work commitments unrelated to TBI 1 20.0
Table 25. Significant Others’ Length of Time of Relocation in Acute Stage: Other Length of Stay (n = 39)
Other acute visit length of stay data Number Percentage
Less than or equal to 1 week 2 5.0
Between 1 week and 3 weeks 2 5.0
More than 3 weeks but less than 5 weeks 1 2.5
5 weeks 2 5.0
4 months 1 2.5
Can’t categorise 7 17.5
Missing data 24 60.0
Appendix L: Background information and healthcare stories
This appendix provides detailed information about the backgrounds and healthcare stories of people with TBI and their family interviewed in this study. I have presented their views according to their interview accounts and have included some of my interpretation of events in italics. In the first column of each case, I have also recorded briefly what was written in the surveys at the time of their completion. This allows comparison of survey data and people’s narratives. In addition, I have coded each case according to the key below to clarify my evaluation of the nature of the continuum of care recollected.
Key: Onset info. Onset information TBI Traumatic brain injury MVA/MBA Motor vehicle accident or motor bike accident CoC Continuum of care Inpt rehabilitation Inpatient rehabilitation Outpt rehabilitation Outpatient rehabilitation GP General Practitioner TAC Transport accident commission CRS Commonwealth Rehabilitation Service Metro Metropolitan
Survey data People with TBI and their family’s story Case #1: Bettina and Bettina sustained her head injury when she fell off her second Paul (partner) floor balcony on a Friday night after work. Paul found her and contacted his neighbours, two women who were both employed Onset info.: nurses. Bettina was flown to a Melbourne metro. hospital for her Severe TBI acute care. She remained there for approximately 20 days. Paul Fall from veranda commuted daily from his home town to Melbourne to visit Bettina 46-55 years while she was in hospital. Paul received no accommodation or Public funding travel support during this time. However, he reported he needed to return home daily to feed the animals and work anyway.
CoC recollected: Bettina remembers receiving “quit smoking” brochures during her Acute specialist care acute stay. However, neither Paul nor Bettina remembered Delayed outpt rehab receiving any information regarding her head injury and the symptoms that were to follow. Bettina reported she received mainly surgical care while at the Melbourne metro. hospital (e.g., facial surgery to fix bone breaks).
Bettina and Paul report receiving little support once Bettina was discharged. They thought Bettina’s GP was responsible for
managing her care on discharge. However, Bettina reported his attitude, competence and poor knowledge of head injury did not help her recovery. Bettina now avoids going to see her GP.
Bettina was referred to CRS by CentreLink for return to work services. She stated that this period of rehabilitation was extremely beneficial in helping her set up her market business. The only other outpatient service she received was psychology. Bettina was assessed by a psychiatrist but felt he had been unfairly biased as a result of a referral letter by her GP. Bettina cannot remember undergoing any formal assessment during this visit. Paul reported received no support services or counselling to help him understand what Bettina was experiencing. Bettina and Paul reported they were not happy with the lack of services and support they received following their discharge from acute care.
The recollected CoC received by Paul and Bettina following Bettina’s head injury was not in line with the services recommended in clinical care guidelines. This could be due in part to the fact that until Bettina received my research invitation she was unaware she had a head injury. Therefore, she felt she was unable to push for services. However, it appears her GP was a perceived gatekeeper for service referrals and given her GP’s reported perception of her as a “drunk”, she may have received limited services regardless.
Case #2: Peter and Peter sustained his head injury in a two car collision on his way to Karen (Fiancée) work in 2005. In this accident, the sole occupant of the second car was killed. Following his accident, Peter was airlifted to a Onset info: Melbourne metro. hospital for 4 weeks before being transferred to Very severe TBI Melbourne rehab. hospital for specialist inpatient rehabilitation. MVA Peter spoke highly of the care he received at the specialist 19-25 years hospital, saying he received all the services he needed to keep his Compensable funding body moving as well as “good mind stimulation”. Peter was discharged to the care of his family after four weeks in inpatient CoC recollected: rehabilitation. At home Peter reported receiving return to work Acute specialist care and counselling services. Peter’s care was funded by the TAC. Specialist inpt Overall, Peter reported he was lucky to receive the care he did. He rehabilitation stated he did not see the need for any improvements. Home-based outpt rehabilitation Karen, Peter’s fiancée, mirrored Peter’s comments, saying he received a great CoC. However, she reported she received no fiscal support to help her visit and support Peter throughout his recovery. Karen did acknowledge, however, that her fractured relationship with Peter’s mother may have been the cause of this. Karen reported Peter’s parents received accommodation support while Peter was in inpatient rehabilitation. Karen stated she was not invited to Peter’s family meetings, nor was she involved in his goal setting.
Peter’s recollected recovery and access to services following his head injury appear to follow clinical care guidelines. It is hard to work out whether his limited access to services following inpatient
rehabilitation is due to his only now developing insight or his lack of awareness/entitlement of available services in his area (i.e., physiotherapy). Either way, he did not identify the need for further services. He and his family were happy to self-manage his care. Interestingly, Peter skirted around the issue of the other car occupant’s death, whereas Karen was happy to acknowledge it as a fact. Peter and Karen both reported no-one within the family or community mention it. They feel Peter needs to be “protected”.
Case #3: Melinda Melinda sustained her head injury after collapsing in her daughter’s room in 2007. She was taken via ambulance to a Onset info: regional Hospital were her husband had to strongly push for her to Severe TBI be seen by a doctor. Melinda perceived that she would have died Fall at the regional hospital if not for her husbands pushing. Melinda 36-45 years was airlifted to a Melbourne specialist hospital following the Public funding results of an MRI scan which revealed blood clotting on her brain. Melinda stayed at the Melbourne hospital for approximately 3 CoC recollected: weeks, during which time she had brain surgery. Melinda reported Acute specialist care she received medical, allied health and psychology services while Inpt rehabilitation at this hospital. She reported she was happy with the services she Outpt rehabilitation received in acute, but was concerned by the lack of bodily and emotional respect showed to her by select nurses.
Melinda was transferred from the specialist acute hospital to a generalist medical centre for inpatient rehabilitation. She remained in this service for 4 days before disengaging. Melinda reported she self-discharged from rehabilitation because she was never told the reasons why she needed to stay and as she was placed a ward with people she perceived had intellectual impairments, she did not feel she belonged. Melinda reported that she did receive allied health services while at this medical centre, but she reported that she did not have insight into her difficulties at that point and so she did not understand why she needed therapy. At this point Melinda said she felt she needed to rest/sleep in order to recover and she felt that she was unable to do this in a busy, noisy hospital.
Once Melinda self-discharged from rehabilitation, she and her husband went away for four days. During this time Melinda reported that she slept constantly. Melinda reported that her husband kept in contact with the medical centre at that time so that they could continue to monitor her recovery. After this Melinda reported that she and her husband returned to her sister- in-law’s house. At this time Melinda’s husband gave up work in order to look after her and her sister-in-law sat with her constantly for a month to look after her, bath her, dress her, and explain to her what had happened. After a period of time Melinda started to access outpatient rehabilitation at a regional centre. However, Melinda reported that the staff in this rehabilitation centre had not been trained to look after people with traumatic brain injuries. Therefore therapy was not always helpful.
Melinda reported that she constantly had to push her local GP in
order to access counselling services and to have repeat MRI scans and follow-up neurosurgery appointments at the specialist acute hospital. She also reported that little support or information was provided to her husband and children. Melinda reported her family received no kind of accommodation or travel support throughout her healthcare journey. She stated that she did not even know such support was available.
Melinda reported she was a publicly funded patient. She self- funds all services and pays for an annual MRI scan and review. She and her family currently receive no ongoing support.
Melinda was offered a public version (i.e., non-specialist) of CoC in line with current clinical care guidelines. However, it appears that due to issues with perceived responsibilities to her family, limited information, poor timing and impaired insight she frequently disengaged from the services offered. Nevertheless, once she was ready to engage it appears that public services were not available which meant that she needed to self-fund aspects of her care. In addition, Melinda’s GP appeared to act as a gatekeeper for service referrals. Luckily Melinda was confident to push for services and as a result, given time got what she needed. Case #4: Trish and Trish sustained her head injury in a sole car accident in 2004. Martin (Partner) Following her accident she was transferred by ambulance to a regional hospital before being airlifted to the specialist metro. hospital. Once at this hospital she had neurosurgery to reduce the Onset info: building pressure. She remained at the specialist hospital for a Very severe TBI week before being discharged home to Martin’s care. Trish MVA received notice of one follow-up neurosurgery appointment with 19-25 years the specialist hospital following her discharge. She was unable to Compensable funding attend this appointment and as a result inadvertently disengaged from the service. Trish reported she has made no attempt to CoC recollected: reengage this service although she reports she needs it. Trish Acute specialist care believes very little hand-over must have been provided to her GP following her discharge from the specialist hospital as she feels she needs to fight “tooth and nail” to get the services she believes she is entitled to. Four years after her accident Trish reported she was finally referred to a psychologist. She stated she has been diagnosed with post-traumatic stress disorder. Trish is very unhappy with the services she received following her head injury. Trish reported her care is funded by the TAC.
Martin, Trish’s partner, is also unhappy with the care Trish has received following her head injury. He stated initially he was not told of her accident because of miscommunication between the police. Once told, he saw Trish at the regional acute hospital before she was transferred to the specialist hospital. Mark reported he received no form of fiscal support throughout Trish’s healthcare journey. He reported his mother and Trish’s mother were vital in providing care for their 4 children while he stayed with Trish in Melbourne. Mark reported that during this time he spent all day in Trish’s room and slept all night in the metro specialist hospital guest lounge. Mark reported that following
Trish’s accident he had to close his shed making business in order to care for her and their children. He stated that Trish’s constant anxiety is draining as she does not like to be left alone with the children, hates driving in cars and did not get the rehabilitative care she needed.
Trish and Martin’s recollected healthcare journey is not in line with clinical care guidelines despite Trish’s compensable status. The only service they appear to have received is Trish’s acute care. According to this narrative Trish’s GP appears to play gatekeeper to her referral for appropriate care. Trish and Mark appear to have very limited self-advocating skills (i.e., even though Trish missed her first neurosurgery review and therefore disengaged with service, they made no attempt to rebook this appointment and reengage), which may be related to their prior limited experience with the health system and limited educational background. Case #5: Oscar Oscar sustained his head injury after being assaulted one Saturday night in May, 2005. He was found in an alley by strangers who initially thought he was drunk, but upon closer inspection could see that he had been assaulted. They called an ambulance and Onset info: Oscar was transferred to a specialist trauma centre. Oscar cannot Very severe TBI remember much of his time in the hospital. He remembers Victim of crime receiving medical care and said he had two friends who were ICU 19-25 years doctors who were able to look out for him (his friend’s brother Private funding and his fiancée). Oscar reported staying at the specialist trauma centre for between 4-7days before being transferred to the metro CoC recollected: rehabilitation hospital for specialist neuro-rehabilitative care. Acute specialist care Specialist inpt Oscar remained at the metro rehabilitation hospital for rehabilitation approximately 4 weeks before self-discharging. Oscar reported he Outpt rehabilitation self-discharged at that time because he was “fed up with the hospital and perfectly capable” of looking after himself. While in rehabilitation Oscar remembers receiving allied health services including physiotherapy, speech therapy, social work and a once- off consultation with an occupational therapist. Oscar also reported that he received neuropsychology services and adequate medical care. Upon discharge Oscar returned to his parents’ home for a period before returning to his flat. Oscar reported that this was a difficult time for him as he felt as if he had been stripped of his independence.
Oscar received outpatient services through the generalist medical centre and the CRS. The services he received included case management, return to work services, a driving assessment, ongoing allied health services, including physiotherapy, neuropsychology and ongoing specialist medical care. Oscar reported that the length, intensity and duration of these services fluctuated throughout his recovery. Oscar stated his original return to work plan was unsuccessful. This meant that he was able to resign and take a holiday. During this time he helped to build a house and overcome bouts of depression while rebuilding his confidence. He has since started his own business and is the
website project officer within a charity organisation.
Oscar reported he no longer receives regular services or ongoing monitoring. However, he stated that he has built a relationship with all of his therapists and therefore believes it would not be hard to re-engage with services if needed. Oscar received compensation through a lump sum payout at the Victims of Crime Tribunal. Oscar believes this lump sum does not reflect his loss of earnings nor ongoing medical costs. Oscar believes that generally funding for head injuries (i.e., compensable vs. public vs. private health insurance) is inequitable.
Oscar’s recollected CoC appears in line with current clinical care guidelines. It seems the care Oscar received following his head injury may have been affected by his and his family’s ability to advocate for his service needs. Various circumstances, including that Oscar lived in Melbourne, was young at the time of his accident, has a high level of educational achievement, close supportive family in a high socio-economic bracket and limited private funds, appear to have all played a role in ensuring he accessed appropriate specialist ongoing TBI care.
Case #6: Daniel Daniel sustained his head injury in 2003 after a motor bike accident on a friend’s farm. Daniel was unable to recall what Onset info: caused his accident, but his friends and family found him Very severe TBI unconscious with the motor bike on top of him. He was not MBA wearing a helmet. Daniel’s family called an ambulance 36-45 years immediately and Daniel was taken to a regional hospital, where a Compensable funding helicopter met him and he was airlifted to a specialist metro trauma centre for his acute care. Daniel remained at this centre for CoC recollected: just over a week, spending 5 days of this time in a coma. Acute specialist care Specialist inpt Daniel was transferred from the trauma centre to a specialist rehabilitation metro rehabilitation hospital for inpt rehabilitation. He stayed at Specialist outpt this hospital for approximately 2 months before being discharged rehabilitation home to receive outpt rehabilitation services through the same Monitoring centre. Daniel reported that the time he spent in inpt rehabilitation was very beneficial. He reported receiving allied health services, including physiotherapy, occupational therapy, speech pathology, dietetics and social work; as well as psychology services and weekly medical reviews. Once Daniel was discharged from inpt rehabilitation he continued to return to the specialist metro rehabilitation hospital for outpt therapy. He continued to do this for another 3-4 months before engaging in a transitional return to work program.
Daniel reported he initially received outpt case management services through the occupational therapy department at the specialist metro rehabilitation hospital. When he was discharged the compensable body then provided this service. He also stated that as an outpt he completed a driving assessment, received occupational and physiotherapy allied health services, attended a life skills psychology group, and received initially 6 months’
medical monitoring. Daniel reported he was extremely happy with the outpt services he received. He reported that it was easy to make the inpt to outpt transition as he knew the staff, particularly the women at reception, who were able to organise Daniel’s taxis to and from therapy sessions.
Daniel reported he had some difficulty transitioning from hospital to home. He reported he had some minor psychiatric difficulties that needed to be addressed. Daniel reported that his family found this time difficult. However, he was able to contact his outpt psychologist at this time, who provided a home visit to offer further information and counselling as needed. Daniel reported that the services he required were available. However, he stated that he needed to ask for them in order for them to begin.
Daniel appeared to receive a version of CoC which specifically follows current national and international clinical care guidelines. The factors which appeared to positively contribute to this include the funding he was allocated (i.e., compensable), his strong family support, pre-injury level of education and social standing (i.e., senior academic), ability to self-advocate and location of residence (i.e., Melbourne).
It is interesting to note that even though Daniel reported he had his accident on a private property in an unregistered vehicle he was still covered by TAC.
Case #7: Timothy and Timothy sustained his head injury in a motor bike accident on Bernice (Wife) Mount Hotham in 2004. Following this accident he was airlifted to the specialist acute hospital where he stayed for approximately Onset info: 6 weeks. Timothy reported that he cannot remember this time but Very severe TBI thought he received medical, allied health and psychology MVA services while at this hospital. Following his acute admission, 46-55 years Bernice reported that Timothy was transferred to the specialist Compensable funding metro hospital for rehabilitation, staying at the rehabilitation hospital for a month before self-discharging to return home. CoC recollected: Bernice felt that Timothy was not ready to be discharged at this Acute specialist care point. However, she needed to travel home for work and Timothy Specialist inpt would not stay in Melbourne by himself. rehabilitation Delayed outpt Timothy reported that while at the specialist metro rehabilitation rehabilitation hospital he received allied health services, including daily occupational and physiotherapy, and weekly speech pathology, social work and neuropsychology visits. Overall, Timothy reported that he found these services helpful. However, Bernice stated that Timothy took a dislike to the neuropsychologist because of the number of living restrictions she placed on him while he was in hospital therefore he would not talk to her in their individual sessions. Overall, Timothy reported that he was very happy with the services he received at the rehabilitation hospital. However, he admits that he remembers very little of that time and only really came to acknowledge his head injury 2 years ago. Bernice reported that although she was disappointed Timothy
wanted to leave hospital after only 2½ months, she questions how beneficial it would have been had he stayed given he does not currently recall anything that went on during that time.
Following his discharge, Timothy and Bernice returned home to a regional centre. Bernice reported that this period in Timothy’s rehabilitation was difficult as there were very few appropriate therapy services he could access. In fact it took them approximately 2 years to receive services from a regional head injury unit. During this time they accessed psychology locally. However, the local psychologist was not trained in head injury and was therefore unable to give appropriate anger and pain management strategies.
Timothy is funded by the TAC; therefore he was flown to a specialist metro rehabilitation hospital for a short burst of outpatient therapy a few years after his head injury. These services included a course on pain and anger management. Unfortunately, this course was not targeted to people with head injuries. Therefore, at the conclusion of the burst of therapy Timothy was unable to remember any of the course content because of auditory memory difficulties. The other two outpatient services provided to Timothy included local physiotherapy and GP management. However, once again their knowledge of head injury was limited, as was the advice they could offer and therapy they provided. Bernice reported that physically Timothy would have benefited if he had remained in Melbourne longer as he now has a lot of scar tissue because the local physiotherapists treated him only with hot packs whereas in Melbourne they worked him in the gym.
The recollected CoC Timothy received followed clinical care guidelines until discharge from inpt rehabilitation and return home to NSW. Once at home Timothy and Bernice sourced local services whose knowledge and experience in TBI appeared limited. Overall, it appears Timothy’s return home to limited services caused the breakdown in his CoC. The extended time delay in referral to an outreach specialist service (i.e., regional brain injury rehabilitation program) also appears to have contributed to this breakdown. It is thought this time delay in part was due to Bernice, Timothy and Timothy’s GP’s limited awareness of available local specialist services.
Case #8: Katrina and Katrina sustained her head injury when she fell from a second Karen (Mother) floor balcony in 2002. Katrina cannot remember what happened at this time, but Karen mentioned that Katrina’s neighbours had Onset info: heard fighting before she fell. The cause of Katrina’s fall is still Very severe TBI unknown. Following her fall Katrina was transferred to the Fall from veranda specialist metro trauma centre for her acute care. Katrina 26-35 years immediately underwent surgery to reduce the pressure of brain Public funding swelling and remained in a coma for approximately 2½ weeks. Katrina’s parents where informed of her injury and were taken to CoC recollected: the Alfred by the local police. Doctors reported that they did not
Acute specialist care expect Katrina to recover. However, Katrina recovered from her Case management coma and was transferred from ICU to the neurosurgery ward Specialist inpt before being discharged to the specialist metro rehabilitation rehabilitation centre for inpt rehabilitation Home-based outpt rehabilitation Katrina spent approximately 3 months at the rehabilitation centre Monitoring in a specialised unit for people with head injuries. She had a key worker, attended regular therapy meetings and had access to allied health services, including physiotherapy (3 sessions weekly), speech pathology and occupational therapy (twice weekly), and social work and dietetics (weekly); psychology services, including neuropsychology and psychiatry; and medical reviews. Katrina reported being extremely happy with the services she received while in inpt rehabilitation Following her inpatient stay Katrina was discharged and returned to her mother’s home just off St Kilda Road. At her mother’s home she received home-based outpatient services for a further 6 months. During this time she continued to receive allied health services, psychology and occasional medical follow-ups. However, medical monitoring required return visits to either Katrina’s GP or a neurologist at the specialist metro acute hospital.
Katrina was publicly funded for her care. She also received funding through the “Support and Choice program” which was managed by a case worker at City Mission. Katrina’s funds through the support and choice program meant that she had a funded carer who could take her out for 3 hours each week.
Karen played a key role in Katrina’s rehabilitation program. Initially, she spent time researching Katrina’s head injury and keeping records of her healthcare journey, before helping to facilitate her rehabilitation while at the specialist metro rehabilitation hospital, which included encourageing and feeding Katrina when necessary. On discharge Karen became Katrina’s primary carer. While she reported this initially terrified her, she stated she received weekly counselling which was hugely beneficial. Karen mentioned she wished this service was ongoing.
Three years after Katrina sustained her head injury Katrina and Karen decided to move to the country. This move was motivated by their need for more room, a safer area, improved quality of life and more affordable housing. Katrina and Karen report they are happy living in a regional centre. However, Karen mentioned she worries about the social limitations Katrina experiences as a result of living in a small country town.
The CoC Katrina appears to have received is in line with the clinical care guidelines recommended for people following moderate-severe TBI. Factors which may have aided this process include the fact that Katrina and Karen lived in Melbourne, that Katrina had a supportive mother who researched available services, and that Katrina received case management through City Mission which played a role in advocating for services and
funding on her behalf.
Case #9: Liza (Mother), Jason sustained his head injury in a motor bike accident in 2004. Phillip (Father) and Soon after his accident he was airlifted to the Alfred Hospital Jason (Jason was unable where he stayed for approximately 8 weeks. Jason received to participate in the mainly medical services whilst at the specialist metro acute interview given the hospital. Overall, Liza, Jason’s stepmother, reported that the care extent of his injuries Jason received was okay. However, she reported that there was following TBI) very poor communication between the doctors and Jason’s family regarding his brain injury and likely prognosis. Jason was Onset info: transferred from the specialist acute hospital to specialist Severe TBI rehabilitation unit for inpt rehabilitation He stayed in this unit for MBA approximately 5 months. Liza reported that while at the rehab unit 26-35 years Jason received good rehabilitation services including allied health, Compensable funding psychology and medical services.
CoC recollected: After 5 months Jason was transferred to a regional centre for Acute specialist care further rehabilitation. Liza reported that Jason was moved to be Specialist inpt closer to his family, who lived in Castlemaine. Both Liza and rehabilitation inpt Phillip, Jason’s father, reported that the care Jason received while rehab at the regional hospital was terrible. Liza reported that the facility Home-based outpt was not well equipped to take young people following head rehabilitation injury. Liza stated the regional hospital traditionally specialised in Still receiving therapy elderly stroke rehabilitation. Liza felt that Jason regressed during his time there.
Twelve months after his accident Jason was transferred from the regional hospital to a Healthscope house. Liza reported she was initially hesitant about this transfer. However, upon seeing this house for the first time she felt as if she had returned “home”. Liza reported that Jason received a number of outpt services once he was discharged from the regional hospital. These services were received both within the Healthscope house and externally at a health centre. The services Liza mentioned included case management services through the TAC; allied health services including physiotherapy, speech pathology, dietetics and occupational therapy; psychology services and medical reviews, both with Jason’s GP and rehabilitation consultant.
Liza reported that neither she nor her family received any form of accommodation or transport subsidy throughout Jason’s CoC. Liza reported she received strong family support, but no services were aimed at empowering her or her family to help them to deal with Jason’s injury.
Jason appears to have received a continuum of care in line with clinical care guidelines for people with moderate to severe TBI. The factors which I think have contributed to him receiving this continuum of care included the severity of his injury, the inability of his family to take him home and yet their support to advocate for services on his behalf, and the funding received.
Case #10: Vera Vera sustained her head injury after being thrown from her horse in 2003. Vera’s neighbour Andrew found her and notified Onset info: ambulance staff who took her to a regional hospital. Andrew Very severe TBI believes Vera sustained her head injury by hitting her head on a Fall when horse riding fence post after falling from her horse. Once Vera reached the 26-35 years regional hospital medical staff decided to immediately transfer her Public funding to a specialist acute trauma centre. Vera reported she was lucky they transferred her quickly because of the size of the blood clot CoC recollected: in her brain. Upon reaching the specialist centre, Vera underwent Acute specialist care neurosurgery to drain the blood clot and reduce the pressure on Home-based outpt her brain. Vera reported she was then placed in a drug-induced rehabilitation coma for 12 days. Vera stated she cannot remember much during her 3 week acute stay. However, she can remember not wanting to be sent to rehabilitation
Following her acute discharge Vera reported being transferred to a rehabilitation hospital in a regional centre. She remained in this hospital for approximately 2 hours before self-discharging. Vera reported that the rehabilitation hospital she was admitted to was not TBI specific and she was the youngest patient in the hospital by at least 30-40 years. Vera reported she found this rehabilitation hospital depressing. She said she felt as if the patients within the hospital were “all there waiting to die”. Vera’s husband, Drew, drove Vera home following her discharge. He contacted Vera’s GP prior to her discharge and home-based rehabilitation was organised. There was a gap of approximately 2 weeks between Vera leaving inpt rehabilitation and outpt rehabilitation services commencing. Vera reported this time was needed as it allowed her to build up her strength in preparation for starting therapy. Vera reported receiving mainly physiotherapy services within her home. However, she also stated she received one-off services from a speech pathologist and dietitian. Vera reported she received weekly physiotherapy for approximately 4-6 weeks.
Vera also reported needing to access her GP while she received outpt services. She reported needing daily injections for 10 days to stop blood clotting and regular dressing changes for her healing tracheostomy site. These services were provided by a nurse. Vera also stated she needed to visit her GP for a driving assessment. Vera reported being extremely happy with the services she received. However, she did mention that services could be improved through the provision of counselling for her family at the time of her accident, and for herself once she was discharged. She also felt that knowing another person who had had a head injury might have been helpful.
The CoC Vera received was modified due to her disengagement from inpt rehabilitation services. Otherwise I suspect it may have followed clinical care guidelines. However, Vera felt immediate home-based rehabilitation following her acute admission was more beneficial for her. She reported that as she had young children she needed to return home. The severity of Vera’s head
injury and the rate at which she gained insight supported the effectiveness of this varied CoC.
Case #11: Patricia John sustained his head injury in 2004 in fight outside his local (Mother) and John bar. Patricia, John’s mother, reported that John was coming to the (Person with TBI – John aid of friends when he was hit from behind. This hit rendered him was unable to unconscious, but it was not until he fell and hit his head on participate in this concrete that he sustained his head injury. John fractured his skull interview as he was on in the fall. He then sustained multiple brain haemorrhages. an overseas working Following his head injury John was taken to a specialist trauma holiday) centre by ambulance for specialised trauma care. Patricia reported John stayed at the specialist centre for 3 days before she Onset info: demanded he be discharged and re-admitted to specialist rehab Severe TBI hospital using his private insurance. Patricia reported she was not Victim of crime happy with the care John received while at the rehab hospital. She 19-25 years stated he remained in casualty throughout his stay as there were Private funding no appropriate beds available on the neurology, neurosurgery or trauma wards. CoC recollected: Acute specialist care Once John was admitted to rehab Patricia reported receiving a Specialist inpt very different level of care. She stated John received specialised rehabilitation neuro-rehabilitation with people with like injuries. Patricia reported that John stayed at the rehab hospital for 2 weeks before being discharged home. While at the hospital John received daily physiotherapy, occupational therapy and speech therapy sessions. He also received services from social work when required. Patricia reported that she was able to attend family meetings while John was at the specialist rehab centre. She stated she found these meetings helpful, not only being given information regarding John’s progress but also helping to develop her understanding of head injuries.
Patricia stated that as a nurse she had a good working knowledge of the health system. She also reported she was comforted by the fact that she always knew someone who would know someone who could help her guide John’s care or point her in the right direction if needed. However, she stated that experiencing head injury as a family member was foreign to her and that the family meetings held at the rehab hospital provided her with much needed support. Patricia also reported she was able to get support from her family and ex-husband.
Following John’s discharge from inpt rehabilitation Patricia reported that John received return to work services and a driving assessment. Patricia stated it was some weeks following John’s discharge when he returned to work using a transitional return to work plan. Patricia reported she suspected that this plan was not closely adhered to, as John and his employer would at times work through scheduled breaks. Patricia reported she thought this was the case because although John had a head injury he looked fine physically. Patricia felt that John’s employer as well as her brother (the builder John finished his apprenticeship with) had little understanding of what a brain injury actually was. Patricia
reported that apart from variations to John’s transition plan, John also had difficulty coming to terms with the discharge restrictions imposed upon him by his doctor, including not being able to drink, drive or play football. Patricia felt that John went through a period of depression following his discharge from hospital. However, he completed his apprenticeship as a builder and is now on a working holiday in the United Kingdom. Patricia stated John has learned plenty in his apprenticeship, has retained the knowledge and has worked as a foreman. She believes his head injury has not affected his current or future job prospects. John is no longer being monitored by specialist staff at the acute or rehab hospitals.
The recollected CoC described by Patricia varies from that described in clinical care guidelines (i.e., acute care while in emergency). However, it appears that Patricia’s knowledge of the health system augmented John’s CoC (i.e., early transfer for specialist rehab).
Case #12: Justin Justin sustained his injuries 3 years ago in a farming accident when a bale of hay fell from his tractor and landed on his head. Onset info: Justin reported that he does not remember much of this time. Very severe TBI However, he remembers being knocked to the ground before Farm accident receiving the care of two paramedic teams. Justin was flown 56-65 years straight to the specialist acute hospital were he reported he stayed Public funding for 8 days. Four of these days were spent in critical care; the other 4 days were spent on the ward. Justin reported that he received CoC recollected: good medical, allied health and prosthetic care whilst he was at Acute specialist care the acute hospital. However, he reported that there was no staff Outpt rehabilitation continuity and that he received the care of many different doctors. Overall Justin reported he was very happy with the care he received.
Following his stay in acute Justin was discharged home to the care of his wife, Gillian. During the first 12 weeks of Justin’s discharge he was required to commute to Melbourne fortnightly to have his halo brace lining changed and have a shower. Justin reported that this was a difficult time as it was hard for him to travel with his halo brace. He stated he was lucky to have his wife to drive him as he believed a trip to Melbourne in a taxi would have cost him at least $120.00. Justin reported that on his visits to Melbourne he consulted different doctors each time. Justin felt this was not a problem for him at that stage as his care was not complicated. However he felt that this discontinuity of staff meant that no member of staff looked holistically at his care.
Justin received private physiotherapy in regional hospital once his halo brace was removed. Justin reported this service was extremely helpful. Justin reported his general practitioner played a very small role in his care during this time. Justin’s recovery is no longer being monitored by the acute hospital or local staff.
The CoC Justin received varies significantly from the
recommendations made in clinical care guidelines for those who have sustained a moderate-severe TBI. Justin initially reported in his survey that he sustained a very severe TBI, and this report is consistent with the AIS inclusion criteria of <2 for this study (see inclusion criteria in Methods chapter). However, in his interview Justin reported he had very few residual difficulties from his head injury. He reported that his CoC was largely focused on the physical injuries he sustained as a result of his accident (i.e., fractured spine). This appears to be the main factor which results in the variation of his CoC from that recommended for those following head injury. Justin was happy with the CoC he received.
Case #13: David and David sustained his head injury in a motor bike accident in Nellie (Mother) Cranbourne 5 years ago. Following his accident he was airlifted to the Alfred Hospital where he received his acute care. David Onset info: remained at the acute specialist hospital for approximately 3 Very severe TBI weeks, and was in a coma for 10 days during this time. Once MBA discharged from acute care, David was admitted to a specialist 26-35 years rehabilitation hospital. He stayed in rehabilitation for Compensable funding approximately 5 months. During this time he received allied health, neuropsychology and medical services. Nellie stated she CoC recollected: thought David made good gains while in rehabilitation. She stated Acute specialist care this was due to the services he received as well as the amount of Specialist inpt family involvement in this stage. rehabilitation Home-based outpt Following graded weekend leave David was discharged from rehabilitation Ivanhoe to return home with his parents. Once at home David received home-based therapy, including speech pathology and psychology. Neither Nellie nor David can remember the improvements David made during this time.
David received services of an occupational therapists on discharge targeting a graded return to work plan. Following this plan David returned to full-time work. However, given his levels of fatigue, full-time work was not sustainable and David attempted part-time work, before finally resigning from his job. The health services David received were funded through the TAC. David received a lump sum payment from the compensable body following his head injury to compensate him for loss of income and living expenses. This lump sum is managed by trustees appointed by the legal system; from it David receives a regular living allowance. He also holds a CentreLink Healthcare card.
David’s recollected CoC is in line with clinical care guidelines. However, David and Nellie reported this was not enough. Their concerns may be based around the timing of service delivery. Nellie reports that services are needed now, 5 years after David’s head injury, more than at the time of his accident. I believe this is largely due to David’s insight development, failed return to work and current sense of isolation. David’s wish to reengage with services is as much an attempt to reengage with the community as it is to improve his current skills.
Case #14: Pauline Pauline sustained her head injury in a bicycle accident in Melbourne 4 years ago. Following her accident she was taken by ambulance to a Onset info: specialist acute hospital where she received acute care. Pauline Moderate TBI remained at the acute hospital for just under a week before being Bike riding accident transferred to specialist rehab unit for inpt rehabilitation. Pauline 56-65 years reported that her length of stay in inpt rehabilitation was approximately Private funding 6 weeks. During this time she received therapy under the instruction of a physiotherapist, speech pathologist, occupational therapist and social CoC recollected: worker. Pauline reported attending two psychology sessions and stated Acute specialist care she was under the care of neuro-consultant. Pauline stated she was Specialist inpt extremely happy with the care she received while in inpt rehabilitation. rehabilitation She spoke very highly of all staff, particularly of the competence and Specialist outpt empathy of the nursing staff. However, Pauline did mention she wished rehabilitation her inpt occupational and speech therapist had taken into account her life experience and competence as a trained teacher, adult literacy tutor and member of Toast Masters. She felt at times they were condescending and thought this might be in part accounted for by their age and limited life experience.
Pauline felt she was discharged from the rehab unit at the right time. However, she stated that once she returned home she was able to do very little for 6 weeks as she was exhausted. As an outpt, Pauline continued to attend the rehab unit weekly for physiotherapy sessions, speech pathology, medical reviews and occupational therapy. She reported her outpatient speech pathology and occupational therapy sessions were short-lived. However, she stated she needed to return to the rehab unit for many months of physiotherapy to work on her balance.
Pauline reported she was proud of the recovery she made following her accident. She reported being able to return to bike riding just 8 months after her accident, 10 months earlier than her doctors initial estimation. However, Pauline’s recovery was compounded by an error made by a naturopath which resulted in double vision, fatigue as a result of commuting to her mother’s nursing home in Corydon, vestibular labyrinthitis, and insomnia. Nevertheless since seeing a new osteopath and her psychologist Pauline is feeling much better. She reported that her friends have also played an important role in her recovery.
The CoC recollected by Pauline followed clinical care guidelines. Factors which contributed to her CoC include that she lived in Melbourne near specialist TBI rehabilitation services and the that she readily engaged, pursued, funded and accessed services she felt she needed.
Case #15: Dominic Dominic sustained his head injury in a motor bike accident on the outskirts of a regional centre 3½ years ago. Following his head injury Onset info: he was airlifted to a metro specialist hospital for acute care. He Moderate-severe TBI remained at the there for approximately a week before being MBA discharged into the care of Naomi (the mother of his daughters). 46-55 years Dominic reported that metro specialist hospital staff forced Naomi to Compensable funding take him home, even though she felt it was too early. He stated that
Naomi said if he was to be discharged, Dominic needed to be CoC recollected: transferred via ambulance to her house in a regional centre. She refused Acute specialist care to drive him home. The hospital organised an ambulance and Dominic Specialist inpt was discharged into her care. rehabilitation Home-based outpt Dominic reported that he was not referred to any services for inpt or rehabilitation outpt rehabilitation following his head injury. He reported he stayed with Naomi and his daughter Grace initially but then moved out to his house in St James. Dominic stated he stayed at St James for less than 12 months before moving into a one bedroom flat in town. He reported that the isolation of his house in St James was not good for his wellbeing. Once Dominic moved into town he accessed the CRS to review his suitability for employment. He told the workers at CRS about his head injury and they decided he was not yet fit to return to work and needed to be assessed at a specialist acquired brain injury unit in a regional centre. Dominic was admitted to this service and remained there for 2 weeks. During this time Dominic reports he was assessed by multiple therapists and deemed not fit for work.
He returned to his home town and is currently enrolled in multiple TAFE courses including sculpture, disability studies, jewellery making and painting. Dominic reported that he sustained quite serious injuries as a result of his motor bike accident. He reported he often has a sore neck, memory difficulties, cannot concentrate on tasks for long periods of time and often “vagues out”. These injuries mean he has been unable to coordinate his own rehabilitative care or advocate for his need for services. Dominic reported that he visits his general practitioner in a local regional centre frequently. However, when he visits a service he needs to tell them what he wants. Dominic reported that he finds this difficult as he does not know what is available.
Dominic’s reported CoC is not consistent with the care recommended for people following moderate-severe TBI. A number of factors may have impacted upon his inability to receive the recommended services, including the lack of referrals made by the initial treating hospital; lack of follow-up by the treating hospital on discharge; lack of specialist TBI services available in Dominic’s home town; Dominic’s limited awareness of appropriate services and his eligibility to access these services; Dominic’s inability to request, find and coordinate services needed; and the absence of family members or a case manager to advocate for services on his behalf.
Case #16: Derek Derek sustained his head injury in a car accident in a rural area 4 years ago. Following his accident Derek’s mother drove him to a regional Onset info: hospital, where he stayed for a few hours before being transferred to Severe TBI another regional hospital. From this hospital Derek was airlifted to a MVA metro specialist hospital where he received his acute care. Derek 19-25 years remained at the specialist hospital for approximately a week. He was in Compensable funding ICU for 2 days during this time. Once discharged from the specialist hospital Derek returned home with his family. CoC recollected: Acute specialist care Derek reported that in hindsight he may have been discharged from the Delayed inpt metro specialist hospital too early and that he might have benefited
rehabilitation from further rehabilitation. However, at the time he was pushing to return home, saying his mother, a trained nurse, could look after him upon his discharge. Once he was home, Derek’s parents self-managed his care. Derek reported that his mother even borrowed a four wheel frame from a local nursing home to help him move around the house. Derek stated that he had difficulties with strength, balance, vision and frustration levels once at home. However, he reported receiving no outpt rehabilitation services.
Derek reported that he followed no graded return to work plan. He just started working full days when he felt able. During this time Derek reported having frequent migraines. Twelve months after returning to work Derek reported that he started to change. He stated his frustration tolerance was reduced and he felt things starting to get on top of him. At this point Derek reported he could not sleep at night. Initially, Derek reported his GP thought he might be depressed. However, after being referred to a metro psychiatrist and after spending time in a metro clinic he was diagnosed with post-traumatic stress disorder. Derek stated that his parents think the onset of this disorder was related to his head injury.
Derek stated he spent 6 weeks in the metro clinic. During this time he attended group therapy and individual sessions with a psychiatrist. Following discharge from this hospital, Derek reported continuing to see his psychiatrist, with whom he had developed a good relationship before being discharged. Derek reported that throughout the past 4 years his head injury has been regularly reviewed by neurosurgeons from either the metro specialist hospital. Derek also reported seeing his GP frequently to monitor his recovery. However, following a recent involuntary admission to a regional mental health unit Derek stated that he no longer trusts his GP and will not see him again. Derek reported that the regional mental health unit recently diagnosed him with schizophrenia. He does not agree with this diagnosis and reported that he is not taking the medication recommended by his treating team as it makes him tired and gain excessive weight. Derek reported that he is disappointed that the regional mental health team does not consult with his psychiatrist in the metro centre, who he feels assessed him more competently. Derek is now currently visited by a mental health nurse each fortnight.
Derek’s reported CoC varies from that recommended for someone following moderate-severe TBI. The factors that may have contributed to the continuum of care he received included his disengagement in acute care; the fact that his acute care team did not refer him to local services on discharge; his impaired insight regarding the extent of his injuries on discharge; and the location of his acute care hospital. However, through the support provided by his family and GP he was eventually able to reengage with his CoC. However, this did not occur until he appeared to have mental health difficulties.