Evaluating participation in children and young people with cerebral palsy

Parents of children and young people with disabilities want, like all parents, a happy and meaningful life for their children. This means a high subjective quality of life and participation, defined in the International Classification of Functioning, Disability and Health (ICF) as 'involvement in life situations'. Society also seeks participation for citizens as expressed in two United Nations conventions on the rights of children and rights of persons with disabilities: children with disabilities are entitled to a life with equal opportunities to participate in family and societal life, like other children.1,2 Orlin et al. report the effects of age and gross motor function on participation of children and young people with cerebral palsy (CP) in the USA.3 The Canadian instrument Children's Assessment of Participation and Enjoyment (CAPE) was completed by 42% of the children or young people themselves, with the help of computer and pictures if needed. The remaining questionnaires were partly or entirely completed by parents. As children as young as 6 years reported how often, where, and with whom they participated in various activities during the last 4 months, there is likely to be some inaccurate recall. The authors categorized the participants by age (children 6–12y and young people 13–21y) and severity of motor impairment (Gross Motor Function Classification System levels I–V). Consistent with the literature, and as expected by the authors, participation decreases with increasing severity of motor impairment, implying that motor impairment is not fully compensated for. Orlin et al. specifically discuss participation in physical activities and its relevance for health and fitness in children and young people with severe motor impairments. Full participation in sport may need personal help, aids, or adaptations – in other words environmental adjustment. A recent study reveals large regional variation in participation of children with CP and suggests this might be explained by cross-country differences in provision of optimal environments.4 Rates of participation in physical activities in children and young people with CP are regarded as low by the authors. But do they mean low compared with what the children need or compared with children without disabilities? They found 14% of young people with CP did not participate in any physical activities; however, in a large survey of young people in the USA5, 25% of young people without disability did not participate in at least 60 minutes of physical activity over the preceding 7 days. These numbers are not comparable, but they confirm that even children without disabilities have low rates of physical activity. We do not know if the reasons for not taking part in physical activity are the same in the two groups. In planning health promotion it is valuable to know the reasons for non-participation and Orlin et al. suggest qualitative studies are needed to explore the thoughts behind the choices children make. Comparison of the participation of children with that of young people revealed a mixed pattern. As expected by the authors, children had higher overall participation and higher participation in recreational activities compared with young people. Young people were predicted to have higher participation in social activities but in fact did not. As mentioned by the authors, this may be related to characteristics of the CAPE which includes more activities appropriate for children than for young people. The concept of participation remains difficult to articulate in a manner which can be measured. Also, children will have a subjective view about their participation and there is debate about whether this should be captured as part of participation or reflected in a quality of life instrument. In the ICF, participation can be qualified by 'capacity' (what a child can do in an ideal environment) and 'performance' (what a child actually does in the environment in which they live). Differences between capacity and performance, according to the ICF, are due to environmental or personal factors. One such personal factor is choice and, as recently discussed by Morris,6 it is important to consider such personal factors if we are to respect an individual's right to choose their activities. Since individual choices will vary between activities, it may be relevant to measure choice or preference at the same time as participation, whilst realizing its subjective nature. CAPE has a companion measure called Preferences for Activities of Children where preferences are assessed. It remains a challenge to develop measures which capture the essence of participation and then to use them in clinical settings and in societal evaluations of children and young people with CP and other disabilities.

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