Participation experiences of young people with cerebral palsy in key life situations: A qualitative study
Jacqueline Y. Ding, Stacey L. Cleary, Prue Morgan
Abstract
AIMS: To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. METHOD: We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated. Interviews were audio-recorded and transcribed verbatim before thematic analysis. RESULTS: An overarching theme of 'branching out into adulthood' was identified. Participants described early adulthood as a time of change, choice, and challenge. The sub-themes were: (1) making sense of my CP as an adult; (2) people's attitudes towards disability and the impacts on me; (3) roadblocks and workarounds; and (4) participation at the time of the COVID-19 pandemic. Participants reported complex views on the new disability insurance scheme. While access to services and support increased, participants experienced significant difficulty negotiating appropriate funding, resulting in frustration and reduced confidence in the scheme. INTERPRETATION: Young people with CP experience complexity as they participate during young adulthood. Alongside exploring how their identity is intertwined with having CP, they face significant barriers to participation when navigating relationships, accessing services, and being involved in the community. WHAT THIS PAPER ADDS: Negative community attitudes about disability affect confidence and self-perception, and hinder participation, in young adults with cerebral palsy (CP). Close friends can act as a buffer for young adults with CP, fostering their participation and bringing joy. A government-funded disability support scheme has improved access to services. However, high levels of advocacy are required to obtain appropriate support. Online learning enhanced the participation and engagement of young adults with CP enrolled at university during the COVID-19 pandemic.