Involvement in daily life activities from the perspectives of children and young people with childhood-onset disabilities: A scoping review.

aimTo 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.

methodWe 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.

resultsOf 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.

interpretationResults 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).