Jacinta Quartermaine, T A Rose, Megan Auld, Leanne Johnston

Abstract

Background and objective: This study focused on the community-based participation experiences of young people with cerebral palsy (CP), investigating the factors that make participation easier or harder.

Methods: Accessible methods were utilized to explore the perspectives of 15 young people with CP aged 15 to 26 years with diverse motor and communication abilities (Gross Motor Function Classification System I = 4, II = 6, III = 1, IV = 3, V = 1, Viking Speech Scale I = 7, II = 4, III = 3, IV = 1). Participants provided regular written reflections, photographs, or videos about their community-based participation. Data were analyzed using reflexive thematic analysis.

Results: Self-reported reflections were grouped inductively into 421 codes, then 22 subthemes and 6 themes: (i) My CP characteristics can make participation in the community more difficult; (ii) My own thoughts, emotions, confidence, and sense of achievement influence the things I do in the community; (iii) Accessibility of the environment and availability of equipment influences my participation in the community; (iv) The range of supports I have available influences my participation in the community; (v) Whether the community activity has been adjusted to include and involve me influences my participation; and (vi) The attitudes, actions, and level of acceptance from others in the community influences my participation.

Discussion: Key factors influencing community-based participation for young people included CP characteristics, thoughts, emotions, confidence, environment, equipment, supports, accommodations, attitudes, actions, and acceptance.

Keywords: Cerebral palsy; community; participation; qualitative thematic analysis; young people.

https://pubmed.ncbi.nlm.nih.gov/42143034/