Reflections on participation in the community, as self-reported by young people with cerebral palsy

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.

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.

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.

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