Submitted in partial fulfilment of the LANCASTER DOCTORATE IN CLINICAL PSYCHOLOGY December 2020 Doctoral Thesis A meta-synthesis of stigma in epilepsy, and an empirical exploration of self-disgust in epilepsy Rebecca Mayor Doctorate in Clinical Psychology Division of Health Research, Lancaster University Word Count Main text Appendices (inc. Total tables, references, abstracts, footnotes and title pages) Thesis Abstract 279 0 279 Literature Review 7973 9366 17339 Research Paper 7978 10133 18111 Critical Appraisal 3986 891 4877 Ethics Section 3845 8382 12227 Total 24,061 28,772 52,833 Thesis Abstract Section one of this thesis describes a meta-ethnographic approach to the synthesis of 24 qualitative studies exploring the experiences of stigma in adults with epilepsy across the globe. Five themes were generated: societal negative perceptions of epilepsy result in discrimination and rejection; internal attributions of blame lead to negative self-perception and shame; impact of stigma on everyday life and associated reliance on others; attempts to manage stigma through concealment and avoidance; support from others is beneficial but dependent on own and others’ understandings of epilepsy. The synthesis highlighted the key individual experiences of epilepsy stigma, which appeared to be to some degree culturally specific. Culturally informed misconceptions of epilepsy were readily internalised which resulted in emotional challenges for participants and impacted on participants’ lives. Section two provides an empirical report of a qualitative exploration into the experiences of self-disgust in adults with epilepsy. Three key themes were identified from analysis of the data: being an outsider, “the feeling of being a bit of a freak;” the inescapable presence of self-disgust, “it’s a niggling feeling that something’s not quite right” and preventing exposure, “living a protected life.” People with epilepsy experienced disgust in reaction to the physical symptoms of seizures and these disgust-based feelings appeared to become internalised following others’ disgust reactions. Avoidance as a strategy to manage self-disgust can be protective but may inadvertently maintain self-disgust. Section three provides a critical appraisal of the thesis. This offers a reflective account of the experiences of developing and conducting this research and some of the strengths and weaknesses of the research. The potential implications for clinical practice and future research are discussed, as well as personal reflections of the research process. Declaration This thesis documents research undertaken between September 2016 and August 2020, in partial fulfilment of the Lancaster University Doctorate in Clinical Psychology. The work presented here is my own, except where due reference has been made. This thesis has not been submitted for the award of a higher degree elsewhere. Signature: Print name: Rebecca Mayor Date: 23/12/2020 Acknowledgements Firstly, I would like to thank all of the people who took part in this research. Without their time it would not have been possible to complete this work. I would also like to thank the clinicians and epilepsy charity, Epilepsy Action, for their support in the recruitment to this study. I would also like to thank my supervisors, Prof Jane Simpson and Prof Markus Reuber, for their advice and support throughout the process of this thesis. I would also like to thank my trainee colleagues. Without their support over the past years, I would never have been able to complete Clinical Psychology training, or this thesis. Finally, I would like to thank my many family members and friends for their unconditional support, patience and humour and for always being by my side throughout this process. Contents Page Section One: Literature Review Abstract 1-2 Introduction 1-3 Method 1-7 Results 1-11 Discussion 1-23 References 1-30 Tables: Table 1: Inclusion/Exclusion Criteria 1-39 Table 2: Characteristics of the Included Studies 1-40 Table 3: Critical Appraisal of Study Quality 1-45 Figures: Figure 1: Process of Selecting Papers for Inclusion 1-47 Appendices: Appendix 1-A: Definitions of Epilepsy 1-48 Appendix 1-B: Search Terms used in Literature Search 1-49 Appendix 1-C: Summary of Relevant Findings of Each Individual Study 1-51 Appendix 1-D: Process of synthesis and emerging themes and concepts 1-56 Appendix 1-E: Epilepsia – Guidelines for Author 1-58 Section Two: Research Paper Abstract 2-2 Highlights 2-2 Introduction 2-3 Method 2-7 Results 2-13 Discussion 2-23 Conclusion 2-28 References 2-29 Tables: Table 1: Demographic details of participants 2-36 Appendices: Appendix 2-A. Semi-structured Interview schedule 2-37 Appendix 2-B. Example of coded transcript excerpt. 2-38 Appendix 2-C. Example of Theme Development: codes and quotes 2-40 Appendix 2-D. Example of theme development: codes and themes 2-41 Appendix 2-E: Epilepsy & Behavior – Guidelines for Author 2-43 Section Three: Critical Appraisal Critical Review 3-2 References 3-14 Section Four: Ethics Section IRAS application form 4-2 Appendices: Appendix 4-A. Research protocol 4-324-9 Appendix 4-B. REC Approval 4-404-32 4-42 Appendix 4-C. HRA Approval . 4-40 Appendix 4-D. Participant Information Sheet 4-504-42 Appendix 4-E. Invite 44-54-50 Appendix 4-F. Consent 4-564-54 Appendix 4-G. Questionnaires 4-584-56 Appendix 4-H. Debrief 4-604-58 4. -60 STIGMA IN EPILEPSY 1-1 Section One: Literature Review Experiences of stigma in people with epilepsy: a meta-synthesis of qualitative evidence Rebecca Mayor Doctorate in Clinical Psychology Division of Health Research, Lancaster University Word Count: 7973 (excluding references, tables, figures and appendices) Prepared for submission to Epilepsia (See Appendix 1-E for author guidelines). All correspondence should be addressed to: Rebecca Mayor Doctorate in Clinical Psychology Division of Health Research, Furness College Lancaster University Lancaster LA1 4YF Tel: +44 1524 592970 Fax: +44 1524 592981 Email: [email protected] STIGMA IN EPILEPSY 1-2 Abstract Objective: Stigma is reported to cause as much distress and effect on the quality of life of individuals with epilepsy as the physical symptoms of seizures. Existing quantitative reviews have focused on describing levels of stigma in epilepsy, but no qualitative review has been currently undertaken despite the increasing number of studies in this area. In attempt to understand the experiences of stigma in adults with epilepsy across different sociocultural contexts, this review reports the results of a qualitative synthesis. Methods: A systematic database search was conducted. The search strategy yielded an initial set of 2,877 relevant papers, of which 24 were included. A meta-synthesis was conducted according to the meta-ethnographic approach described by Noblit and Hare (1988) adapted for health research by Britten et al. (2002). Results: Five themes were generated: societal negative perceptions of epilepsy result in discrimination and rejection; internal attributions of blame lead to negative self-perception and shame; impact of stigma on everyday life and associated reliance on others; attempts to manage stigma through concealment and avoidance; support from others is beneficial but dependent on own and others’ understandings of epilepsy. These themes highlighted the key individual experiences of epilepsy stigma, which appeared to be to some degree culturally specific. Culturally informed misconceptions of epilepsy were readily internalised which resulted in emotional challenges and impacted on participants’ lives. Strategies for coping with this were described. Significance: The synthesis demonstrated the experiences of stigma in adults with epilepsy and highlighted some of the key similarities and differences in these experiences across sociocultural contexts. Educational programmes to inform communities about epilepsy continue to have relevance. STIGMA IN EPILEPSY 1-3 Keywords: Seizures, Discrimination, Experiences, Qualitative Epilepsy has recently been re-defined to aid clinical usage and understandings of the condition1 (see Appendix 1-A). As such, it is understood that there are many different types of epileptic seizures and epilepsy is viewed as a heterogenous condition in terms of cause, severity and consequences. As such, having a persistent condition characterised by an increased risk of experiencing unprovoked seizures has multifaceted implications for the lives of individuals with the condition beyond the impact of acute seizures themselves.2 Therefore, people with epilepsy who continue to experience seizures are more likely to report negative consequences of the condition than those who are seizure free.3 People with epilepsy are reported to experience difficulties in their lives as a result of cognitive, emotional and psychological factors.4 Thus, having epilepsy can impact on levels of anxiety, depression and self-esteem, as well as social and leisure opportunities and family functioning.5 People with epilepsy experience social and legal restrictions on their lives, in relation to driving6 and employment,7 which may have additional implications for their welfare. One factor which has been consistently found to be negatively associated with psychosocial wellbeing in people with epilepsy is stigma. Stigma may cause as much distress and affect the quality of life of individuals with epilepsy as the physical symptoms associated with the condition.8 As such, higher levels of perceived stigma have been found to correlate with more anxiety9 and depression5 and