A passage to adulthood : ethnographic perspectives on transitional care for adolescents with epilepsy and a comorbid learning disability

Abstract

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.