Experiences of Disengagement from Mental Health Services: an Interpretative Study

EXPERIENCES OF DISENGAGEMENT FROM MENTAL HEALTH SERVICES: AN INTERPRETATIVE STUDY by CHRISTOPHER WAGSTAFF A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY Nursing, Health & Population Sciences College of Medical & Dental Sciences University of Birmingham 2015 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. ABSTRACT Whilst there is evidence of a range of effective treatments available for people with severe mental health problems (SMHP), people frequently disengage from mental health services (MHS). This thesis investigates experiences of disengagement of people with SMHP and comprises two studies: 1) semi-structured interviews to elicit the experiences of people with SMHP and a history of disengagement from MHS; and 2) building on those findings, focus groups with staff from assertive outreach teams (specialising in providing care for people with SMHP and a history of disengagement). The participants were those perceived as the most disengaged from MHS yet they were willing to engage with the research. Interpretative phenomenological analysis was used to develop themes for individual participants and then across the participants. Disengagement from MHS was part of a wider experience of a limited connection to social structures, including an ambivalent and complex relationship with MHS. There was a sense of sadness in all aspects of the participants’ experience but they had developed strategies to reinforce personal resilience and to reassert personal identity. The findings of this thesis can be employed to better understand the context of disengagement from MHS and consequently better inform future engagement with this client group ACKNOWLEDGEMENTS Firstly, I would like to acknowledge my office mates Tracey Valler and Helen Frank for putting up with me whilst I wrote my PhD. Helen, in particular, showed great sufferance during my analysis of study 1. I would also like to thank various colleagues – Dr Amelia Swift, Dr Alistair Hewison, Dr Caroline Bradbury-Jones, Dr Tarsem Singh-Cooner, Prof Fiona Irvine, Dr Michael Larkin, and Richard Salkeld amongst others – who have offered invaluable support and guidance along the way. I would also like to thank all the people in the participating NHS Trust for their support, time and patience whilst I was doing both study 1 and 2. Thanks must also go out to the seven participants in study 1 to whom the world of academia may seem a strange place, but agreed to share their experiences with me, especially to ‘Clue’ who has subsequently passed away. Without them there would not have been a thesis. I must thank my supervisors Dr Bob Williams, Dr Derek Farrell and Dr Herman Wheeler for their input at various stages of the project, but most of all to Dr Hermine Graham for being with me from beginning to end. Finally I would like to thank my eldest two sons, Zach and Sheridan, for taking an interest in the study and my wife, Angie, for providing constructive criticisms at opportune moments. Also I must thank my mother, Jean, for both proof reading this thesis and unflagging support throughout my education. Related to which I would like to thank my late father, Ian, for being an inspiration to me and without whom I probably would not have done a PhD. TABLE OF CONTENTS <a href="#11_0">OVERVIEW .............................................................................................................................1 </a><a href="#13_0">CHAPTER 1: INTRODUCTION ...........................................................................................3 </a><a href="#15_0">1.1 Definitions</a><a href="#15_0"> </a><a href="#15_0">...................................................................................................................5 </a> <a href="#15_1">1.1.1 </a><a href="#15_2">1.1.2 </a><a href="#17_0">1.1.3 </a><a href="#23_0">1.1.4 </a><a href="#26_0">1.1.5 </a> <a href="#15_1">Severe mental health problems.............................................................................5 </a><a href="#15_2">Dual diagnosis ......................................................................................................5 </a><a href="#17_0">Disengagement from mental health service</a><a href="#17_0">s</a><a href="#17_0">.</a><a href="#17_0">.......................................................7 </a><a href="#23_0">Assertive Outreach .............................................................................................13 </a><a href="#26_0">Summary.............................................................................................................16 </a> <a href="#27_0">1.2 Literature</a><a href="#27_0"> </a><a href="#27_0">Review ......................................................................................................17 </a> <a href="#29_0">1.2.1 </a><a href="#0_0">1.2.2 </a> <a href="#29_0">Summary and critique of the literatur</a><a href="#29_0">e</a><a href="#29_0">.</a><a href="#29_0">..............................................................19 </a><a href="#0_0">Background literature summary .........................................................................30 </a> <a href="#0_1">1.3 Study</a><a href="#0_1"> </a><a href="#0_1">Aim and Research Questions...........................................................................31 </a><a href="#0_2">CHAPTER 2: METHODOLOGY ........................................................................................33 </a><a href="#0_3">2.1 IPA</a><a href="#0_3"> </a><a href="#0_3">and Philosophical Underpinnings.......................................................................33 </a> <a href="#0_4">2.1.1 </a><a href="#0_5">2.1.2 </a><a href="#0_2">2.1.3 </a> <a href="#0_4">Phenomenology, hermeneutics and idiography..................................................33 </a><a href="#0_5">Critique of phenomenology in nursing research.................................................34 </a><a href="#0_2">Interpretative phenomenological analysis and methodological considerations .38 </a> <a href="#0_6">2.2 IPA</a><a href="#0_6"> </a><a href="#0_6">and Focus Group</a><a href="#0_6">s</a><a href="#0_6">.</a><a href="#0_6">..............................................................................................43 </a><a href="#0_2">CHAPTER 3: RESEARCH METHOD................................................................................46 </a><a href="#0_7">3.1 Summar</a><a href="#0_7">y</a><a href="#0_7">.</a><a href="#0_7">...................................................................................................................46 </a><a href="#0_8">3.2 Study</a><a href="#0_8"> </a><a href="#0_8">1: Method.........................................................................................................46 </a> <a href="#0_9">3.2.1 </a><a href="#0_4">3.2.2 </a><a href="#0_10">3.2.3 </a> <a href="#0_9">Sampling, access and recruitment ......................................................................46 </a><a href="#0_4">Development of the interview schedule .............................................................48 </a><a href="#0_10">Data collection....................................................................................................48 </a> <a href="#0_11">3.2.4 </a><a href="#0_2">3.2.5 </a> <a href="#0_11">Data analysis.......................................................................................................50 </a><a href="#0_2">Ethical issues and trustworthiness of voic</a><a href="#0_2">e</a><a href="#0_2">.</a><a href="#0_2">.......................................................53 </a> <a href="#0_2">3.3 Study</a><a href="#0_2"> </a><a href="#0_2">2 .......................................................................................................................58 </a> <a href="#0_12">3.3.1 </a><a href="#0_13">3.3.2 </a><a href="#0_14">3.3.3 </a><a href="#0_15">3.3.4 </a><a href="#0_16">3.3.5 </a> <a href="#0_12">Background.........................................................................................................58 </a><a href="#0_13">Sampling, access and recruitment ......................................................................58 </a><a href="#0_14">Development of the interview schedule. ............................................................58 </a><a href="#0_15">Method................................................................................................................59 </a><a href="#0_16">Data analysis.......................................................................................................60 </a><a href="#0_2">CHAPTER 4: FINDINGS......................................................................................................62 </a><a href="#0_17">4.1 Participants’</a><a href="#0_17"> </a><a href="#0_17">Characteristics ......................................................................................62 </a><a href="#0_18">4.2 Research</a><a href="#0_18"> </a><a href="#0_18">Findings......................................................................................................65 </a> <a href="#0_19">Individual idiographic statements.....................................................................................65 </a><a href="#0_20">4.2.1 </a><a href="#0_2">4.2.2 </a><a href="#0_1">4.2.3 </a><a href="#0_2">4.2.4 </a><a href="#0_21">4.2.5 </a><a href="#0_18">4.2.6 </a><a href="#0_21">4.2.7 </a> <a href="#0_20">Arthur .................................................................................................................65 </a><a href="#0_2">Black Ze</a><a href="#0_2">e</a><a href="#0_2">............................................................................................................67 </a><a href="#0_1">Bubble</a><a href="#0_1">s</a><a href="#0_1">.</a><a href="#0_1">..............................................................................................................68 </a><a href="#0_2">Clue.....................................................................................................................71 </a><a href="#0_21">Jos</a><a href="#0_21">h</a><a href="#0_21">.</a><a href="#0_21">....................................................................................................................72 </a><a href="#0_18">Rebel...................................................................................................................75 </a><a href="#0_21">T..........................................................................................................................76 </a> <a href="#0_22">4.3 Superordinate</a><a href="#0_22"> </a><a href="#0_22">and Subordinate Themes ....................................................................78 </a> <a href="#0_6">4.3.1 </a><a href="#0_22">4.3.2 </a> <a href="#0_6">Theme A: Limited connection with social structure</a><a href="#0_6">s</a><a href="#0_6">.</a><a href="#0_6">........................................80 </a><a href="#0_22">Theme B: Multiple strategies to reinforce personal resilience and to reassert </a><a href="#0_22">personal identity .............................................................................................................102 </a><a href="#0_15">4.4 Study</a><a href="#0_15"> </a><a href="#0_15">2 Findings ......................................................................................................110 </a> <a href="#0_23">4.4.1 </a><a href="#0_6">4.4.2 </a> <a href="#0_23">Summary...........................................................................................................110 </a><a href="#0_6">The dichotomy of assertive outreach teams’ roles ...........................................111 </a> <a href="#0_24">4.4.3 </a><a href="#0_18">4.4.4 </a><a href="#0_25">4.4.5 </a><a href="#0_11">4.4.6 </a><a href="#0_6">4.4.7 </a><a href="#0_26">4.4.8 </a> <a href="#0_24">Words used were an important component of engagement..............................112 </a><a href="#0_18">Medication is a difficult issue...........................................................................113 </a><a href="#0_25">Drugs are part of everyday life for service users..............................................113 </a><a href="#0_11">Cultural aspect to the experience of disengagement ........................................114 </a><a href="#0_6">Professionals’ awareness of spirituality. ..........................................................117 </a><a href="#0_26">Age does not make a difference?......................................................................118 </a><a href="#0_2">CHAPTER 5: DISCUSSION...............................................................................................120 </a><a href="#0_27">5.1 What</a><a href="#0_27"> </a><a href="#0_27">are the Experiences of People with a Diagnosis of Severe Mental Health </a><a href="#0_27">Problems and a History of Disengagement from Mental Health Services? .......................120 </a><a href="#0_2">5.1.1 </a><a href="#0_16">5.1.2 </a><a href="#0_28">5.1.3 </a><a href="#0_4">5.1.4 </a><a href="#0_16">5.1.5 </a><a href="#0_29">5.1.6 </a><a href="#0_30">5.1.7 </a><a href="#0_31">5.1.8 </a><a href="#0_1">5.1.9 </a> <a href="#0_2">Recruitment of participants ..............................................................................122 </a><a href="#0_16">Limited connections to social structures ..........................................................123 </a><a href="#0_28">Relationship with mental health services .........................................................126 </a><a href="#0_4">Medication and the relationship with mental health services...........................129 </a><a href="#0_16">Models of disengagement.................................................................................130 </a><a href="#0_29">Identity..............................................................................................................138 </a><a href="#0_30">Belonging to and exclusion from community and society ...............................140 </a><a href="#0_31">Disengagement, family and social support.......................................................144 </a><a href="#0_1">Implications for future practice ........................................................................147 </a> <a href="#0_2">5.1.10 What</a><a href="#0_2"> </a><a href="#0_2">are the experiences of people with a diagnosis of severe mental health </a><a href="#0_2">problems and a history of disengagement from mental health services? Conclusio</a><a href="#0_2">n</a><a href="#0_2">.</a><a href="#0_2">...152 </a><a href="#0_15">5.2 How</a><a href="#0_15"> </a><a href="#0_15">do the Research Participants Understand their own Health, Well-being and </a><a href="#0_15">Illness</a><a href="#0_15">?</a><a href="#0_15">.</a><a href="#0_15">...............................................................................................................................154 </a><a href="#0_11">5.2.1 </a><a href="#0_22">5.2.2 </a> <a href="#0_11">Future practic</a><a href="#0_11">e</a><a href="#0_11">.</a><a href="#0_11">.................................................................................................159 </a><a href="#0_22">How do the research participants understand their own health, well-being and </a><a href="#0_22">illness? Conclusio</a><a href="#0_22">n</a><a href="#0_22">.</a><a href="#0_22">........................................................................................................160 </a><a href="#0_31">5.3 How</a><a href="#0_31"> </a><a href="#0_31">do the Research Participants Perceive their Needs in Relation to Statutory </a><a href="#0_31">Mental Health Services</a><a href="#0_31">?</a><a href="#0_31">.</a><a href="#0_31">....................................................................................................161 </a> <a href="#0_32">5.3.1 </a><a href="#0_33">5.3.2 </a><a href="#0_34">5.3.3 </a><a href="#0_0">5.3.4 </a><a href="#0_8">5.3.5 </a> <a href="#0_32">Perspectives on medication ..............................................................................162 </a><a href="#0_33">Changing perceptions with age ........................................................................163 </a><a href="#0_34">Faith, spirituality and solac</a><a href="#0_34">e</a><a href="#0_34">.</a><a href="#0_34">............................................................................165 </a><a href="#0_0">Future practic</a><a href="#0_0">e</a><a href="#0_0">.</a><a href="#0_0">.................................................................................................166 </a><a href="#0_8">Conclusio</a><a href="#0_8">n</a><a href="#0_8">.</a><a href="#0_8">.......................................................................................................167 </a> <a href="#0_35">5.4 What</a><a href="#0_35"> </a><a href="#0_35">are the Research Participants’ Understandings of the Role of Drugs and </a><a href="#0_35">Alcohol within their Lived Experience?.............................................................................168 </a><a href="#0_21">5.4.1 </a><a href="#0_31">5.4.2 </a> <a href="#0_21">Future practic</a><a href="#0_21">e</a><a href="#0_21">.</a><a href="#0_21">.................................................................................................173 </a><a href="#0_31">Conclusio</a><a href="#0_31">n</a><a href="#0_31">.</a><a href="#0_31">.......................................................................................................174 </a> <a href="#0_36">5.5 Critique</a><a href="#0_36"> </a><a href="#0_36">of Study/ Limitations of Study ..................................................................174 </a><a href="#0_37">5.6 Publication</a><a href="#0_37"> </a><a href="#0_37">...............................................................................................................176 </a><a href="#0_2">CHAPTER 6: CONCLUSION ............................................................................................179 </a><a href="#0_38">6.1 Implications</a><a href="#0_38"> </a><a href="#0_38">for Practic</a><a href="#0_38">e</a><a href="#0_38">.</a><a href="#0_38">.........................................................................................179 </a><a href="#0_31">6.2 Implications</a><a href="#0_31"> </a><a href="#0_31">for the Methodology ...........................................................................183 </a><a href="#0_8">6.3 Implications</a><a href="#0_8"> </a><a href="#0_8">for Future Research.............................................................................184 </a><a href="#0_39">6.4 Implications</a><a href="#0_39"> </a><a href="#0_39">for Policy.............................................................................................185 </a><a href="#0_2">REFERENCES .....................................................................................................................188 </a><a href="#0_2">APPENDICES.......................................................................................................................222 </a><a href="#0_40">Appendix 1:</a><a href="#0_40"> </a><a href="#0_40">Cycle of Avoidance Permissio</a><a href="#0_40">n</a><a href="#0_40">.</a><a href="#0_40">...............................................................222 </a><a href="#0_2">Appendix 2:</a><a href="#0_2"> </a><a href="#0_2">Interview Schedul</a><a href="#0_2">e</a><a href="#0_2">.</a><a href="#0_2">...................................................................................224 </a><a href="#0_2">Appendix 3:</a><a href="#0_2"> </a><a href="#0_2">Reflective Diary ........................................................................................226 </a><a href="#0_2">Appendix 5:</a><a href="#0_2"> </a><a href="#0_2">Examples of Clustered Codes ...................................................................260 </a><a href="#0_41">Appendix 6:</a><a href="#0_41"> </a><a href="#0_41">Summary Table of all Themes ..................................................................272 </a><a href="#0_2">Appendix 7:</a><a href="#0_2"> </a><a href="#0_2">Permission from RCN Publishin</a><a href="#0_2">g</a><a href="#0_2">.</a><a href="#0_2">............................................................275 </a><a href="#0_2">Appendix 8:</a><a href="#0_2"> </a><a href="#0_2">Ethical Approval from BEN NRES ..........................................................276 </a><a href="#0_2">Appendix 9:</a><a href="#0_2"> </a><a href="#0_2">Consent For</a><a href="#0_2">m</a><a href="#0_2">.</a><a href="#0_2">...........................................................................................280 </a><a href="#0_2">Appendix 10:</a><a href="#0_2"> </a><a href="#0_2">Patient Information Sheet (PIS1</a><a href="#0_2">)</a><a href="#0_2">.</a><a href="#0_2">.............................................................281 </a><a href="#0_2">Appendix 11:</a><a href="#0_2"> </a><a href="#0_2">Study 2 Consent Form ..............................................................................286 </a><a href="#0_2">Appendix 12:</a><a href="#0_2"> </a><a href="#0_2">Study 2 Participant Information Sheet (PIS2) ..........................................287 </a><a href="#0_2">Appendix 13:</a><a href="#0_2"> </a><a href="#0_2">Study 2 Ethical Approval..........................................................................290 </a><a href="#0_2">Appendix 14:</a><a href="#0_2"> </a><a href="#0_2">Oxford University Press Permissio</a><a href="#0_2">n</a><a href="#0_2">.</a><a href="#0_2">........................................................291 </a>LIST OF FIGURES AND TABLES <a href="#28_0">Figure 1: Process of the Literature Review ..............................................................................18 </a><a href="#0_42">Figure 2: Biddle et al. (2007) Cycle of Avoidance (COA) ......................................................24 </a><a href="#0_43">Figure 3: Analysis Process (Wagstaff & Williams, 2014) .......................................................52 </a><a href="#0_44">Figure 4: Schematic Illustration of the Experience of Social defeat as the Common </a><a href="#0_44">Mechanism Underlying Six Major Schizophrenia Risk Factors ............................................125 </a><a href="#27_1">Table 1: Search Terms for the Literature Review ....................................................................17 </a><a href="#0_45">Table 2: Participants’ Characteristic</a><a href="#0_45">s</a><a href="#0_45">.</a><a href="#0_45">......................................................................................62 </a>

Experiences of Disengagement from Mental Health Services: an Interpretative Study

Details

Download

Copyright

We respect the copyrights and intellectual property rights of all users. All uploaded documents are either original works of the uploader or authorized works of the rightful owners.

Support