Participation experiences of young people with cerebral palsy in key life situations: A qualitative study

This study explored the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations. Topics included education, employment, relationships (with friends, family, romantic), hobbies, and community activities. It also examined the impact of the National Disability Insurance Scheme (NDIS) on participation and health service access. Sixteen young adults with CP (aged 16 to 30 years) participated, from four Australian states. Interviews were recorded and transcribed exactly as spoken, before analysis.

Results highlighted the changes and challenges they face during the transition into and through young adulthood. The overarching theme of ‘branching out into adulthood’ captured the broad and varied hopes, plans, and experiences of participation during this time. Participants spoke about how being a young adult was an exciting time to try new things, exploring who they are, building meaningful relationships with others, and also explored how the COVID-19 pandemic lockdowns affected their participation in varied aspects of life. However, participation in life areas can be challenging when they may be treated differently by others because of their disability. For participants who had a NDIS plan, although they were financially supported to access various supports and services, many found the processes of setting up, accessing, and managing their funds confusing. Participants described a ‘big communication block’ between them and the NDIS when trying to access information and services, resulting in frustration and reducing confidence in the NDIS.