A scoping review is a type of research study that uses a systematic process to look for and organise what is already known about a specific topic. This helps us get a ‘big picture view’ of what we know and can highlight what we do not know yet.

This scoping review was done to help us understand what “being involved” in daily activities means for children and young people with childhood-onset disabilities. The authors looked for information from research studies in three major medical databases. They only included studies where children and young people with childhood-onset disabilities shared their own experiences in their own words through interviews or other qualitative methods. They found 30 studies that did this – this shows that it is not common for studies to include the voices of children with disabilities in research about participation.  The authors then used all the quotes from the 30 studies to analyse the experience of involvement.

From this analysis, the authors found six main ideas (called themes) about involvement.

The first theme was about the ‘in-the-moment’ experience of involvement in daily activities. Involvement was found to be an experience of ‘inner dedication’ or ‘investment’ while taking part in an activity.

This experience ranged from, non-involvement (not being involved at all), to partial involvement (shifting in and out of involvement), to full involvement (immersed, not distracted), to hooked involvement (it’s difficult to stop) and finally to involvement overload (feeling exhausted, or worn out from too much involvement effort).

Figure 1 Continuum of levels of involvement from Kaelin et al (1)

The other five themes were about how children and youth thought about their involvement experience either during or after an activity. These themes were:

1. Experiencing a sense of achievement.
This theme was about experiencing involvement when they felt a sense of competence (being able to do what they need to do well) and of actively taking part in the process.

2. Experiencing doing the things that I want to do, finding joy and meaning.
This theme was about experiencing involvement when taking part in activities that they preferred doing. It was also about getting the right balance of space and support to participate, as well as experiencing feelings of enjoyment and meaningfulness doing them.

3. Experiencing a sense of being who I am and who I aspire to be.
This theme was about experiencing involvement when they were able to be their real selves and there are opportunities to grow into the person they want to be.

4. Experiencing belonging and meaningful roles in a group or society.
This theme was about experiencing involvement when feeling they belong, that there is a social connection, and they have valued roles in the activity, or group or society.

5. Experiencing recognition as an individual and community and society member.
This theme was about experiencing involvement when they felt – and were – recognised, noticed, appreciated, and understood.

Figure 2 Conceptual ideas related to the experience of involvement. Colours modified from original. From Kaelin et al (1)

The findings matter because they give us clearer guidance on how to design supports and rehabilitation that goes beyond helping young people to attend activities. Just ‘being there’ isn’t enough, involvement is most important. We can use this guidance to help children and young people be positively involved in the everyday activities that shape their lives, with all the benefits that come with involvement.

The review also found that most past studies only asked about involvement in fun or favourite activities. When we do this, we do not learn about how children and young people experience involvement in the activities they must do, or those that they find hard, unpleasant or do not want to do.

The authors recommended that the new involvement scale of “inner dedication” now needs to be checked and refined with more children and young people, to make sure it really matches their experiences and can be measured well.

Citation:

1. Kaelin, V. C., Quaaden, K., Lindgren, H., Granlund, M., & Imms, C. (2026). Involvement in daily life activities from the perspectives of children and young people with childhood-onset disabilities: A scoping review. Developmental Medicine & Child Neurology, 00, 1–14. https://doi.org/10.1111/dmcn.70228