Young people (13 to 21) with disabilities in transition from childhood to adulthood: An exploratory, qualitative study of their developmental experiences and health care needs

Abstract

Young people develop self-identity by trying roles and experiences, setting goals and peer comparison. With support and participatory experiences, they can develop strong self-concepts, resilience and goal-oriented behaviours. These developments underpin self-care. Young people’s health care needs should be understood within this context. However, the experience of young people with disabilities, who are major health care users, is understudied and relies on indirect report.The primary aims of this study were, first, to begin to understand some factors of significance to young people with disabilities, in development from childhood to adulthood and, second, within this context, explore their health care requirements at this age. A secondary aim was to learn more about the process of enabling young people with complex needs to participate in qualitative research.Participants were recruited from a school for people with disabilities and a life-skills course at a higher education college. They participated in a focus group (N=29) or interview (N=5). Some required additional communication support. Robust qualitative methods were used to thematically analyse the data.The findings suggest how positive experiences in one area of life can support participation in other domains. We conclude that achieving closer inter-agency working is essential and requires not just good communication between systems (such as health, school and home), but a shared understanding and vision of how to promote the personal development of young people.