Peer-reviewed article
Involvement in daily life activities from the perspectives of children and young people with childhood-onset disabilities: A scoping review.
Kaelin VC, Quaaden K, Lindgren H, Granlund M, Imms C ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This scoping review examined how children and young people with childhood-onset disabilities experience involvement in daily life activities. The researchers reviewed 30 qualitative studies to understand what 'involvement' means from the children's own perspectives. They found that involvement ranges from non-involvement to overload, and identified six key concepts that describe how children process and reflect on their activity experiences. The findings could help improve rehabilitation services and interventions designed for children with disabilities.
Key points
- Six concepts represent how children and young people with disabilities experience involvement in activities
- Involvement exists on a continuum from non-involvement to involvement overload, representing the in-the-moment experience
- Five additional concepts describe how children process, interpret, and reflect on their experiences of involvement
- The review synthesized 30 qualitative studies from peer-reviewed journals published after 2001
- Future research should explore involvement in undesirable activities and whether concepts vary by context and personal factors
Limitations
This scoping review synthesizes existing qualitative literature rather than collecting new empirical data, so it cannot provide primary evidence about children's experiences. The review does not indicate in which countries the included studies were conducted, limiting understanding of geographic variation in findings.
Abstract
Aim To gain a comprehensive understanding of participation, particularly the construct 'involvement', in daily life activities from the perspective of children and young people with childhood-onset disabilities. Method We conducted a scoping review of literature from PubMed, CINAHL, and PsycINFO. We included articles if they examined the experiences of involvement in activities from the perspective of children and young people with childhood-onset disabilities, used qualitative methods, and were published in peer-reviewed journals after 2001. Data (e.g. age, narratives on involvement) from included studies were extracted, mapped, and thematically synthesized. Results Of 5241 articles, 30 met the inclusion criteria. We identified six concepts representing the experience of involvement in activities from the perspective of children and young people with childhood-onset disabilities. One concept reflected a continuum of inner dedication or investment in activities, ranging from non-involvement to involvement overload, which can be understood as the in-the-moment experience of involvement, representing the core of the involvement experience. Five additional ideas captured how children and young people process, interpret, and reflect on their experiences of involvement. Interpretation Results can inform paediatric rehabilitation measures and interventions focused on involvement. Future research should explore children and young people's involvement in undesirable activities and whether the concepts of involvement vary by context (e.g. country, activity setting) and personal factors (e.g. age, type of disability).