Adapted cycling in young children with cerebral palsy: practice and evidence of effect.

Participation has become an important domain of the World Health Organisation’s International Classification of Functioning to demonstrate health and well-being outcomes. However, children with cerebral palsy can have limited choices for participation in recreational activities that demonstrate such effects. They have equal rights to enjoy play activities and should expect to have them adapted for their needs. Adapted cycling provides one opportunity for families to participate together in a community activity. It is however not provided by health professionals and relies on the voluntary sector. Healthcare practice, particularly physiotherapy, remains focussed on manual skills seeking to change the child’s abilities, however a recent review suggested this can be ineffective and that a more ‘hands off’ approach should be considered. Seeking out and developing appropriate recreational activities may achieve the same goals and enable the child to function more independently. However, the potential to develop or adapt these recreational activities can be a postcode lottery, relying on individuals with an interest in specific areas. Recent United Kingdom initiatives have seen an increase in funding for sport related activities. Participation is wider than sport and further consideration needs to be given to other non-competitive activities. So whilst participation choices may be recommended by health care professionals, few are able to provide these in a health context. The effects of participation in recreational activities upon a child with cerebral palsy have a limited evidence base. Most research has utilised a positivistic approach seeking to measure the just the physical effects. More recent research has broadened to develop measures to capture their qualitative experiences (Stewart et al, 2012). Some have used validated questionnaire designs; others have used creative visual and participatory methods. This paper will present some findings from a mixed methods adapted cycling study emphasising the qualitative aspects to bring out the younger children’s voices. This will include a digital story made by one of the children about the enjoyment she gets from a range of activities. Further case studies will be used from the author’s pilot doctoral data exploring the ‘Lifeworld’ of children and young people with cerebral palsy to illustrate health and emotional well-being effects. Examples will be drawn from other researchers who have used participatory methods to explore how this evidence might add to our understanding of children with cerebral palsy learning to manage their condition. This direction of developing autonomy and self- determination is being developed and as practice is informed, it can respond by changing its emphasis (Powrie et al,2015). Powrie, B., Kolehmainen, N., Turpin, M., Ziviani, J. and Copley, J. (2015), The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis. Developmental Medicine & Child Neurology, 57: 993–1010. doi: 10.1111/dmcn.12788. Social Participation of Adolescents with Cerebral Palsy: Trade-offs and Choices. Debra A. Stewart , John J. Lawless , Lorie J. Shimmell , Robert J. Palisano , Matthew Freeman , Peter L. Rosenbaum , Dianne J. Russell Physical & Occupational Therapy In Pediatrics Vol. 32, Iss. 2, 2012