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

The 30 included studies each asked a slightly different question about involvement, so the themes come from a mixed set of studies rather than studies asking the same thing. Some quotes were translated into English before analysis, which may have changed their meaning, and the authors note that the experience of involvement may itself be shaped by culture. Most studies reported only male and female sex or gender, and only one reported the family's socioeconomic background or parental education, so the themes say little about gender-diverse children or about family context. How severe a child's disability was is not reported in the included studies, and the authors say severity may matter more than the diagnostic label. Only 25% of titles and abstracts, and 5% of full texts, were screened by two people, and one researcher did the thematic coding, with the team reviewing themes afterwards. Most included studies focused on activities children enjoyed, which the authors say may have made the overall picture more positive than it is. The two people with lived experience of childhood-onset disability reviewed the themes at one point in the process; the authors say involving them throughout would have strengthened the work. Participants ranged from 5 to 24 years across the studies, so the themes mix young children and young adults.

The authors state they have no interests that might be perceived as posing a conflict or bias. Funding was from Stiftung für Ergotherapie Zürich (Ergo-Stiftung).

Do not treat the five levels of involvement as a finished measure or rating scale. They are descriptive themes built from a thematic synthesis of 30 studies, and the authors say future research is needed to validate or refine them before they are used to measure involvement or to design interventions.