Transition to adulthood: Perspectives from young people with cerebral palsy, parents, and health professionals

Abstract

Aim: This descriptive qualitative study explored the transition to adulthood for young people with cerebral palsy (CP), gathering perspectives from young people, parents, and health professionals.

Method: Twenty-one semi-structured interviews were conducted with young people with CP aged 16 to 22 years, and their parents, and 27 interviews were conducted with health professionals. Data were analysed using the framework method.

Results: An overarching theme ‘from passenger to pilot’ depicts how young people gradually take on a more autonomous role during transition with four subthemes reflecting the multiple transitions young people navigate. System transitions describe the differences in expectations and care philosophies as young people move from a child-centred to adult-oriented health system. Power transitions highlight dynamics between young people, parents, and health professionals that hinder young people's autonomy in health management. Developmental transitions describe the development of young people's autonomy through enhanced personal capacities, facilitated or constrained by interactions with parents and health professionals. Social and educational transitions describe aspirations and barriers in broader life-course participation.

Interpretation: To empower young people with CP, transition support must extend beyond service coordination to address communication, power-sharing, and relational continuity. Holistic approaches that recognize transition as a negotiated process, shaped by interactions between young people, parents, and health professionals are needed to support autonomy, engagement, and preparedness for adult services.