Abstract
The aim of this study was to explore the lived experience of transition from adolescence to adulthood for young people living with cerebral palsy and in so doing inform occupational therapists, and others, as to what might promote positive life opportunities. The research question asked what is the lived experience of transition from adolescence to adulthood for young people with cerebral palsy?A public involvement group informed the design which was based on hermeneutic phenomenology. Purposive sampling was used to recruit six participants between the ages of 18 to 25 years, living with cerebral palsy as permanent wheelchair-users, recruited via the voluntary sector and media adverts. Data were co-generated via written accounts and interviews with each participant with analysis informed by hermeneutic and existential theory. The findings relate largely to an understanding of the body, the perception and influence of others, and being understood and heard in the world. These are presented initially in the form of hermeneutic stories and then through three eidetic themes - the storm of uncertainty, capsizing in a world of others, and securing anchorage.
Implications for practice include the need to recognise that services might be failing, professionals are encouraged to listen more to young people, service integration across health, social care and education is necessary, and that the culture of these needs to change. Recommendations are for service integration to be prioritised followed by provision of coordinators for each young person, to work more effectively with families whilst preparing young people for independence, and to invest in new strengths-based services based on equality and partnership across the adolescent to early adulthood period. Phenomenological insight is provided via revelation of being-in-the-world with others, being judged, the perception of others, and a desire to be understood and dwell in a safer world. The implications for practice and recommendations encourage those who work with young people living with severe disability to reflect upon the efficacy of services and encourage deep change across health, social care and education so as to enhance life opportunities.
| Date of Award | May 2021 |
|---|---|
| Original language | English |
| Awarding Institution |
|
| Supervisor | Kathleen Galvin (Supervisor), Pirjo Vuoskoski (Supervisor) & Graham Stew (Supervisor) |