Living in transition - experiences of health and well-being and the needs of adolescents with cerebral palsy

BackgroundTransition to adulthood for adolescents in general is a multifaceted process, and for adolescents with cerebral palsy (CP) it also involves transition from child- to adult-oriented support. CP entails a variety and combination of disabilities, which in association with external factors may make the transition to adult health services difficult. The aim of this study was to gain a deeper understanding of how adolescents with CP experience their own health, well-being and need of support during their transition to adulthood. MethodsAn inductive qualitative approach was used based on interviews with 12 adolescents with CP aged 17-18 years and living in Sweden. Manifest and latent content analysis was used for the analysis of data. ResultsThe results are described in the main theme Living in transition and looking forward to being an adult, but not feeling ready yet and being in need of further support'. Five subthemes highlight the adolescents' experiences of belonging to a family, of the importance of friends and love, of managing daily activities, being surrounded by support and having hopes for the future. ConclusionsInterviews with adolescents with CP provide valuable information for the planning of transition programmes and for the support of adolescents with disabilities who are in the transition to adult living. According to the adolescents in this study, the support should be flexible and not be fixed to biological age. Personal, individualized information and support was desired by the adolescents in order to be able to manage their own transition. One option to facilitate transition is the stepping-stone of being close to parents or staff members during the first phase, after leaving the parental home.