DClinPsy Portfolio VOLUME 1 The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) Jasbir Kaur Dhillon A thesis submitted to the University of Hertfordshire in partial fulfilment of the requirements of the degree of Doctor of Clinical Psychology June 2016 The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 1 Contents page Acknowledgements 5 Abstract 6 1.0 Introduction 7 1.1 Personal Reflections on ABI 7 1.2 Setting the Context 8 1.3 Models Examining Adjustment to ABI 11 1.4 Research on the Experiences of ABI 14 1.5 Research on the Lived Experience of ABI 18 1.6 Personal Construct Methods for the Exploration of the Experience of ABI 20 1.7 Systematic Review of Literature on the Lived Experience of ABI 21 1.8 Literature Review of Research on the Lived Experience of ABI 26 1.9 Rationale for this Research 34 2.0 Method 35 2.1 Design 35 2.2 Participants 39 2.3 Ethical Considerations 44 2.4 Data Collection 45 2.5 Procedure 47 2.6 Location of Data Collection 47 2.7 Transcription of Interviews 47 2.8 Data Analyses 48 2.9 Quality Assurance 50 3.0 Results 53 3.1 Results of Repertory Grids 53 3.2 Results of Interpretative Phenomenological Analysis 74 4.0 Discussion 97 4.1 Main Findings 97 4.2 Nature of Construing Underpinning the Interpretation of Experience 102 4.3 Reflections on the Experience of Males with an Acquired Brain Injury 104 4.4 Research Methods for Participant Engagement: Reflections on the use of Repertory The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 2 Grids 106 4.5 Further context to the findings: Cognitive and Physical Deficits 106 4.6 Methodological Considerations 107 4.7 Clinical Implications 111 4.8 Recommendations for Future Research 112 5.0 Conclusions 114 6.0 References 115 7.0 Appendices 138 Appendix 1. Table Summarising Papers Identified for Literature Review 138 Appendix 2. Principles, Definitions and Application of Yardley’s (2008) 139 Evaluative Criteria (a), Application of Yardley’s (2008) Evaluative Criteria to Papers as part of Literature Review (b) Appendix 3. Permission Letters from Recruitment Sites 144 Appendix 4. Table of PHQ, GAD, MPAI and ACE-III Scores 146 Appendix 5. Severity Data 147 Appendix 6. Ethical Approval Notifications 148 Appendix 7. Information Sheet for Potential Participants 151 Appendix 8. Repertory Grid used for Current Study 155 Appendix 9. Interview Schedule 156 Appendix 10. Proforma Sheet 157 Appendix 11. Excerpt from Reflective Diary 161 Appendix 12. Signed Agreement from Transcription Service 163 Appendix 13. Audit Trail for Analysis 164 Appendix 14. Slater Analysis of Repertory Grid for Percy 202 List of Tables Table 1. Stage One of Search for Papers 24 Table 2. Stage Two of Search for Papers 25 Table 3. Table Summarising Typologies Identified by Crisp (1993) 32 Table 4. Inclusion and Exclusion Criteria 40 Table 5. Summary of Participant Characteristics 43 Table 6. Repertory Grid Data Output Provided by Idiogrid, Based on Winter (2013) 49 The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 3 Table 7. Mixed Method Quality Measures (Cameron, 2011) and Corresponding Strategies 52 Table 8. Table Summarising Derek’s Constructs 54 Table 9. Table Summarising Bruce’s Constructs 55 Table 10. Table Summarising Lance’s Constructs 56 Table 11. Table Summarising Percy’s Constructs 57 Table 12. Table Summarising Deans’ Constructs 58 Table 13. Table Summarising Robert’s Constructs 59 Table 14. Commonalities in Constructs Across Cases 60 Table 15. Construct Poles with Negative Connotations Applied to the Self with ABI 61 Table 16. Master and Subordinate Themes 76 List of Figures Figure 1. Diagram of ‘Y’ Shaped Model taken from Gracey, Evans & Malley (2009) 14 Figure 2. Flowchart Representing Systematic Review Search Process 26 Figure 3. Plot Representing Derek’s Construing 62 Figure 4. Plot Representing Bruce’s Construing 64 Figure 5. Plot Representing Lance’s Construing 66 Figure 6. Plot Representing Percy’s Construing 69 Figure 7. Plot Representing Dean’s Construing 71 Figure 8. Plot Representing Robert’s Construing 73 The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 4 Acknowledgements I would like to thank the group of men that participated in this research: Derek, Bruce, Lance, Percy, Dean and Robert. It was a privilege to have heard their stories. I would also like to thank my research supervisors Anna Green, Professor David Winter and Dr Scott Ferguson for their advice, guidance and support throughout. In addition, I would like to thank the organisations that supported me with the recruitment for this research. I would also like to thank my family for the ongoing love, patience and support they have shown me. I would particularly like to thank my sister for believing in me every step of the way. I also want to thank Sapna and the ‘misfits’ for sustaining me throughout this process, your support has been invaluable. Finally, I would like to say a special thank you to Tushar, who has without fail ‘validated my core structure’ throughout the ups and downs of the training process. The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 5 Abstract Acquired brain injury (ABI) is predominantly experienced by males and younger populations in the United Kingdom (UK). Although some research exists exploring the experiences of individuals living with an ABI, no research exists in the UK specifically exploring the lived experiences of males with an ABI. This study aimed to explore the lived experience of males with a mild to severe ABI, and understand the construing that underpinned the meaning they gave to their experiences. A mixed methods design was used, combining the use of repertory grids and Interpretative Phenomenological Analysis (IPA) of data collected via semi- structured interviews. Six working-age males with a moderate to severe ABI participated in the study. Five themes emerged from the data, including invisibility, painful relationship with society, post-injury growth, a vulnerable mind and importance of others in recovery. Repertory grids found commonalities within constructs, a predominantly tight process of construing as well as commonalities within the structure of construing. Repertory grids were also found to be a helpful method in supporting the research process. The clinical implications of this study were discussed, highlighting the need for further psycho-educational and psychological support. Recommendations for further research were suggested, including exploration of the experience of individuals with difficulties engaging with narrative form research, or from ethnic minority backgrounds in the UK. The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 6 1.0 Introduction This chapter will begin with a personal introduction to the researcher. The aim of this is to provide insight into the researcher and what brought them to the topic of exploring the male experience of Acquired Brain Injury (ABI). It is necessary to reflect on how personal thoughts, feelings and beliefs may impact how researchers understand the experiences of others (Shaw, 2010). In light of this, an introduction to the researcher will be provided for transparency, so the reader is made aware of how these personal experiences may go on to impact the research. This section will be written in first person as recommended by researchers using qualitative methods (Elliott, Fischer & Rennie, 1999; Lichtman, 2013), and to make the subjective nature of interpretive research more explicit for the reader (Lichtman, 2013). Following the introduction to the researcher, this chapter will go on to provide an overview of what ABI is and how it may impact on people’s lives, including definitions, prevalence and key policies. It will then present the main areas of research focusing on ABI, including the lived experience of ABI, and more specifically the lived experience of males with ABI. This chapter will then present a systematic review and a critique of the existing literature. Following this, the research rationale and aims for this study will be presented. 1.1 Personal Reflections on ABI 1.1.1 Introduction to the Researcher I am a 31-year-old British-Indian woman who was born in the United Kingdom (UK). I am from a small Sikh Punjabi family, and have lived in East London for the vast majority of my life. I am a Trainee Clinical Psychologist and have worked within mental health and psychological services for five years, with the inclusion of my time spent engaging in clinical psychology training at the University of Hertfordshire. As part of my clinical experience I have worked within health psychology, as well as having undertaken separate postgraduate studies within the area of health psychology. I have no personal or familial experience of cognitive difficulties or brain injury. I have not experienced any major difficulties or losses with my health, however I have experienced the relational, emotional, psychological and practical consequences of long-term health conditions within my family. I explicitly note this for the reader as a potential bias to the way in which this research may have been approached, as well as to reflect the process of self-reflexivity I engaged in during the early stages of considering this research topic. The Constructions and Experiences of Males with an Acquired Brain Injury (ABI) 7 1.1.2 Epistemological Position I align myself with the epistemology of social constructionism at a personal level, however professionally I align myself to pragmatism. I have held the view that there can be multiple meaningful perspectives or realities (Andrews, 2012) throughout my life, however, I have only come to label this as social constructionism during my clinical psychology training.