Experiences of participation in daily life of adolescents and young adults with cerebral palsy: A scoping review

Stacey L Cleary, Prue E Morgan, Margaret Wallen, Ingrid Honan, Nora Shields, Freya E Munzel, James R Plummer, Cassandra Assaad, Petra Karlsson, Evelyn Culnane, Jacqueline Y Ding, Carlee Holmes, Iain M Dutia, Dinah S Reddihough, Christine Imms

• PMID: 39673293
• DOI: 10.1111/dmcn.16196

Abstract

Aim: To synthesize the experiences of 15- to 34-year-olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.

Method: A mixed-methods scoping review was undertaken and six electronic databases searched (January 2001 to August 2023). Participation foci and thematic outcomes were mapped to the International Classification of Functioning, Disability and Health. Results were integrated using a convergent integrated analysis framework, and data analysis completed through thematic synthesis. Themes were mapped to the family of Participation-Related Constructs.

Results: Thirty-eight publications (32 studies; 2759 participants) were included. More participants were male (n = 1435), walked independently (n = 1319), and lived with their families (n = 1171). 'Claiming my adulthood and "doing" life' was the unifying descriptor of participation, conveying the effortful work young people felt necessary to take their places in the adult world. The physical accessibility of the environment was a significant barrier to participation, as were people's negative attitudes or misconceptions about disability. A close-knit 'circle of support', typically family members, formed a supportive foundation during this period.

Interpretation: Young people with CP aim to participate fully in adult life, alongside their peers. Improved community accessibility, inclusion, and more supportive health environments would ensure they could live the lives they choose.

https://www.mycpguide.org.au/

https://upmovement.org.uk/