http://www.playwales.org.uk/eng/

‘All children and young people have the right to rest, leisure, play and recreation and to take part in cultural and artistic activities’

Children and young people (CYP) with cerebral palsy (CP) can have limited choices for participation in recreational activities. 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).

Healthcare practice, particularly physiotherapy, remains focused on manual skills seeking to change the child’s abilities, however a recent review suggested this can be ineffective (Novak et al, 2013). Seeking out and developing appropriate recreational activities may achieve the same goals and enable the child to function more independently.

‘Participation is wider than sport and further consideration needs to be given to other non-competitive 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 can provide these in a health context. Some schools provide the opportunity for disabled children and young people to learn to ride a bike or swim. The effects of participation in recreational activities upon the CYP with CP’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). These approaches underpin my PhD study to really find out from the CYP themselves.

My ‘VOCAL’ PhD study is exploring the views, experiences and choices of CYP with CP aged 9 -16 years, who find walking difficult. The research question is exploring with CYP with CP and their carers by exploring their perceived emotional well-being effects from participation in recreational activities. This research is including CYP 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 CYP 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).

References:

Beresford, B. 2012. Working on Wellbeing: Researchers’ Experiences of a Participative Approach to Understanding the Subjective Wellbeing of Disabled Young People. Children and Society 26, pp. 234-240.

Curran, T. and Runswick-Cole, K. 2013. Disabled Children’s Childhood Studies: Critical Approaches in a Global Context. Basingstoke: Palgrave Macmillan.

Mannay, D. 2015. Visual, narrative, and creative research methods: application, reflection and ethics. Oxon: Routledge.

Novak, I. et al. 2013. A systematic review of interventions for children with cerebral palsy: state of the evidence. Developmental Medicine & Child Neurology 55(10), pp. 885-910.

Pickering, D. M. et al. 2012. Adapted bikes: what children and young people with cerebral palsy told us about their participation in adapted dynamic cycling. Disability and rehabilitation. Assistive technology 8(1), pp. 30-37.

Pickering, D. M. et al. 2015. Analysing mosaic data by a ‘Wheel of Participation’ to explore physical activities and cycling with children and youth with cerebral palsy. International Journal of Developmental Disabilities 61(1), pp. 41-48.

Play for Wales. 2013. Article 31 resources [Online]. Play Wales. Available at: [Accessed: 16.06.16].

Powrie, B. et al (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.. Stewart, D.A. et al. (2012) Physical & Occupational Therapy In Pediatrics Vol. 32, Iss. 2, 2012.

United Nations Children’s Fund. 1989. United Nations Convention on the Rights of the Child [Online]. New York: UNICEF. Available at: http://www.unicef.org/crc/files/Rights_overview.pdf [Accessed: [24.02.16]].

VIPER: Voice, Inclusion, Participation, Empowerment, Research. 2013. A literature review of the participation of children and young people in decision making [Online].  Available at:

https://councilfordisabledchildren.org.uk/our-work/participation/policy/research-young-peoples-participation-local-decisions-viper