Exploring the transition experiences of young adults with cerebral palsy

Abstract

AbstractBackgroundIt is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting.MethodsEleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one‐on‐one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six‐step thematic analysis to create an interpretive description of participants' transition experiences.ResultsThree themes were generated: (1) “preparedness of the young adult and parent,” which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self‐management skills during transition; (2) “coordination of transfer process and continuity of care,” which illustrated the impact of transfer coordination on continuity of care; and (3) “adjusting to adult services,” which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency.ConclusionDedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well‐coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs.