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Morbid Learning Disability A Passage to Adulthood: Ethnographic perspectives on transitional care for adolescents with epilepsy and a co- morbid learning disability Thesis submitted in accordance with the requirements of the University of Liverpool for the degree of Doctor in Philosophy Shelda-Jane Elizabeth Smith Rigby Department of Public Health and Policy October 2019 Abstract A Passage to Adulthood: Ethnographic perspectives on transitional care for adolescents with epilepsy and a co-morbid learning disability – Shelda-Jane Smith Rigby Transition is the planned and purposeful movement of adolescents with a chronic health condition into adult services. It aims to promote independence and self- management of young patients with regard to their ongoing health and care needs. However, particular challenges (including a reluctance of patients and families to leave the familiar paediatric environment and increased risk of psychological distress during the transitional period) have been identified as young patients move between these services. Consequently, this care practice has been identified as a key area for national improvement. In searching for ways to address these challenges, practitioners, researchers and policy makers have focused upon implementing care interventions that aim to build independence and responsibility amongst young patients. Given that young people who have epilepsy and severe forms of co-morbid learning disabilities [ELD] may not always reach complete independence from their carers, questions remain as to whether the aims of the transitional process are applicable to this population. Therefore, the aim of this thesis is to (re)specify the transition ‘challenge’ by documenting and analysing the institutional practices and lived experiences of ELD through a transitional care service. This study is the first to ethnographically examine the practice of UK transitional care for young people with ELD. Through a multi-sited ethnographic approach, I show that the transitional care between two hospitals in the north of England (and wider ‘social’ domains such as the family home and social care environments), is a highly situated and negotiated practice. Furthermore, narrative and observational methods of data collection with clinicians, care professionals, families and young people with ELD reveal transitional care to be a practice that is bound up with assumptions about what it means to be an adolescent, tensions in cultures of care, expectations regarding rites of passage and normative conceptualisations of the childhood-adulthood dichotomy. Based on these findings, the central argument of this thesis is that, whilst UK adolescent healthcare is a complex and contested care practice that organises and orders patients based on chronological age, it is also a social practice that operates in the context of wider political agendas and social ideals. In situating ELD transition within its institutional context, this study exposes the sociocultural arrangements that shape contemporary understandings and experiences of adolescence and disability. Crucially, it shows how society and culture shape biomedical practices and understandings of the adolescent patient. Contents A Passage to Adulthood: Ethnographic perspectives on transitional care for adolescents with epilepsy and a co-morbid learning disability Abstract .......................................................................................................................... Declaration ..................................................................................................................... Acknowledgements ........................................................................................................ Dedication ...................................................................................................................... Acronyms and shortened words used in the thesis ........................................................ List of Tables and Figures .............................................................................................. Introduction ................................................................................................................ 1 The case of Ashley X ............................................................................................... 1 Epilepsy Transitional Care ....................................................................................... 5 Rationale and Overview of Thesis ........................................................................... 7 Chapter 1 - Problematising Epilepsy Transitional Care: A literature review ... 10 Part 1: A Clinical Perspective of Transitional Care ............................................... 13 Part 2: Understandings of Adolescence: Perspectives from the psy, neuro and social sciences ........................................................................................................ 27 Part 3: Understanding the Biomedicine-Sociocultural Nexus: The work of clinical ethnographies .......................................................................................................... 42 Conclusion .............................................................................................................. 49 Chapter 2 - Methodology and Methods ................................................................. 51 Chapter 3 – Bridging Cultures of Care: The rise, implementation and development of the teenage epilepsy clinic ............................................................ 90 Part 1: Initiation of a UK Teenage Epilepsy Clinic ................................................ 94 Part 2: Bridging the Gap: Whose challenge is it anyway? ................................... 114 Conclusion ............................................................................................................ 121 Chapter 4 - Acts of Stabilisation: The role of policy, management and research practice .................................................................................................................... 123 Part 1: Policing practice: The role of policy in stabilisation ................................ 126 Part 2: Creating the Transition Nurse: The role of management in stabilisation . 134 Part 3: Evidence-Based Medicine: The role of research in stabilisation .............. 139 Conclusion ............................................................................................................ 145 Chapter 5 – Producing Idealised Subjects: A journey into an independent and responsibilised adulthood ...................................................................................... 148 Part 1: Materialities of Care: Shaping the experience of adolescence ................. 149 Part 2: Making Ideal Subjects: The values of transitional care ............................ 167 Conclusion ............................................................................................................ 177 Chapter 6 – Transition and its Tensions: The Parentectomy ............................ 180 Part 1: Functions of the ELD Parentectomy: Autonomy and thanatophobia ....... 187 Part 2: Tensions in knowledge and expertise ....................................................... 203 Conclusion: The rhetoric and the reality .............................................................. 212 Chapter 7 – Transition and its Tensions: The out of sync mind/body .............. 214 Part 1: From Asexuality to Sexuality ................................................................... 217 Part 2: (In)visibility of disability: Appropriate ways of looking disabled ........... 231 Conclusion: The rhetoric and the reality .............................................................. 242 Chapter 8 – Transition and its Tensions: The paraclinical workforce ............. 245 The making of a ‘paraclinical’ workforce ............................................................ 249 Conclusion: The rhetoric and the reality .............................................................. 257 Chapter 9 – Conclusion ......................................................................................... 259 The Dignity of Care - Reflections on disability and the problem of normalcy . 259 Transitioning: A negotiated and situated process ................................................. 264 Diversity and Disability ........................................................................................ 265 Re-conceptualising Adolescence .......................................................................... 267 The Dignity of Care: Reflections for transitional practice ................................... 269 References ............................................................................................................... 271 Appendix 1. Parent/carer information sheet and consent form ........................ 295 Appendix 2. Interview Guide and Schedule ........................................................ 300 Appendix 3. Research Ethics Approvals .............................................................. 303 Declaration This thesis is the result of my own work. The material contained within this thesis has not been presented, nor is currently being presented, either in part or wholly for any other degree qualification. I was solely responsible for all data collection and analysis. Acknowledgements To see six years of hard graft, now in its final form, is boss. This PhD has accompanied me through some of the biggest events of my life, including my wedding day, the birth of my
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