Participation in recreational activities: views, experiences and choices from children and young people with cerebral palsy.

Participation has become an important domain of the World Health Organisation’s International Classification of Functioning to demonstrate health and well-being outcomes (World Health Organisation, 2007). 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 physical needs (United Nations Children’s Fund, 1989). Adapted cycling provides one opportunity for families to participate together in a community activity (Pickering et al, 2012; Pickering et al, 2015). It is however not provided by health professionals and relies on the private and 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 (Novak et al, 2013). 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 (Chin and Reid, 2015). Participation is however 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. Some educational facilities provide the opportunity for disabled children and young people to learn to ride a bike or swim for example. The effects of participation in recreational activities upon a child with cerebral palsy’s emotional well-being has a limited evidence base to date. 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 emotional well-being experiences (Stewart et al, 2012). Some have used validated questionnaire designs; others have used creative visual and participatory methods (Beresford, 2012; VIPER, 2013; Mannay 2015).It is these approaches that underpin my PhD study to really find out from the children and young people themselves. My ‘VOCAL’ PhD study is exploring the views, experiences and choices of children and young people with cerebral palsy aged 9 -16 years, who find walking difficult. The research question is exploring with children and young people with cerebral palsy and their carers, to find out what helps or hinders their participation. Also exploring their perceived emotional well-being effects from participation in recreational activities. This research is including children and young people with different communication strategies, seeking to position their ‘voices’ centrally to the enquiry by utilising a case study design (Curran and Runswick-Cole, 2013). Pilot data has revealed that children can be resilient when given new opportunities that build their confidence and self-esteem, focussing on what they can do (in press, 2017). This direction of developing autonomy and self-determination is still being developed and as practice is informed, it can respond by changing the emphasis towards the emotional well-being as well as the physical benefits from participation in recreational activities (Powrie et al, 2015)