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

Journal article

Cleary, Stacey L., Morgan, Prue E., Wallen, Margaret, Honan, Ingrid, Shields, Nora, Munzel, Freya E., Plummer, James R., Assad, Cassandra, Karlsson, Petra, Culnane, Evelyn, Ding, Jacqueline Y., Holmes, Carlee, Dutia, Iain M., Reddihough, Dinah S. and Imms, Christine. (2025). Experiences of participation in daily life of adolescents and young adults with cerebral palsy : A scoping review. Developmental Medicine and Child Neurology. 67(5), pp. 572-590. https://doi.org/10.1111/dmcn.16196
AuthorsCleary, Stacey L., Morgan, Prue E., Wallen, Margaret, Honan, Ingrid, Shields, Nora, Munzel, Freya E., Plummer, James R., Assad, Cassandra, Karlsson, Petra, Culnane, Evelyn, Ding, Jacqueline Y., Holmes, Carlee, Dutia, Iain M., Reddihough, Dinah S. and Imms, Christine
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.

Year2025
JournalDevelopmental Medicine and Child Neurology
Journal citation67 (5), pp. 572-590
PublisherWiley-Blackwell Publishing Ltd.
ISSN1469-8749
Digital Object Identifier (DOI)https://doi.org/10.1111/dmcn.16196
PubMed ID39673293
Scopus EID2-s2.0-85206381877
Page range572-590
FunderNational Health and Medical Research Council (NHMRC)
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online14 Dec 2024
Publication process dates
Accepted28 Oct 2024
Deposited27 May 2025
Grant ID1171758
Additional information

© 2024 Mac Keith Press.

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