Over the last few years there have been a number of articles and editorials in this journal on participation. I think it will still be some years before we understand how best to formulate the concept and measure it.
Majnemer et al.1 examine the participation in leisure activities of 6- to 12-year-old children with cerebral palsy (CP). Taken alongside their other recent article on leisure in the same children,2 the authors have reported whether participation happens, preferences for and enjoyment of participation, determinants of preferences, determinants of participation, and the association of preferences with actual participation. It is a bit convoluted, and I agree with Parush and Ribtman3 who, in their commentary on the earlier article,2 pointed out that the authors defined leisure as ‘those activities the individual freely chooses to participate in during their spare time because they find such activities enjoyable’. As leisure is therefore chosen and enjoyed, what sense does it make to then measure preference and enjoyment? Further, as the reports cover only 55 children, 60% in Gross Motor Function Classification System level I, we must be careful not to over-interpret findings.
Nevertheless, the two papers are an important contribution to this subject; and, in particular, the authors make a convincing case that a key message for schools, rehabilitation specialists, and policy makers is that leisure should be promoted just as much as pursuit of scholastic achievement, self-care, and mobility.
The main findings are that social and recreational activities were most preferred and self-improvement activities least preferred. Actual participation more or less follows preferences but not completely. The children report much enjoyment of their participation. Sex and age influence preferences. A child’s intrinsic motivation is a determinant of preference, especially for skill-based leisure; and a very important determinant of actual participation across all the leisure domains.
The authors conclude that determination of preferences is central to child-centred practice and should be part of evaluation processes. This is eminently sensible but does it tell us about children with CP or rather what is eminently sensible for all children? It is likely that personal factors such as age, sex, and motivation exert similar influences for all children.
Environmental factors will also be relevant to reduced participation and to preferences. Children’s preferences may be influenced by what is available and indeed the authors suggest this when explaining why children in special schools have greater preference for skill-based activities – such activities are more readily available for the child with disabilities in a special school.
I am still not persuaded that we should capture subjective preference and enjoyment when measuring participation. We need to know at population or group level what children with CP do regardless of their preferences or enjoyment. Otherwise there is a danger that we interpret preference as a result of free personal choice whereas it may be determined by structural and attitudinal aspects of the environment. Perhaps the capability approach4 is relevant here. Having ascertained that a child has the capacity to do an activity in an ideal environment, the child is then asked ‘In your current circumstances, would you do this activity if you felt like it?’.
In developing strategies to assist disabled children we must be careful not to seek change in personal factors such as motivation or family factors such as stress or lifestyle to an extent that would not be expected for non-disabled children and their families – whilst neglecting the real difference between disabled and non-disabled children, which is that their environment is not adjusted for optimal participation.