A kaleidoscope of well-being to illustrate the participation of disabled children and young people in accessible leisure activities

The ‘VOCAL’ study was based on disabled children’s “right to rest, leisure, play and recreation and to take part in cultural and artistic activities” (United Nations Children’s Fund 1989, p. 10). Children included in the ‘VOCAL’ study could not walk and used alternative and augmentative means of communication. This case study research adapted positioning theory and reframed the idea of a child’s position, in suitable equipment, in an environment conducive to support them and the people who helped or hindered their participation in leisure activities.

A new paper from the study highlights the fluctuations in well-being, meaning this is a fluid state and is not fixed and can change within an activity to increase or decrease engagement by a variety of factors (Pickering et al 2023). Attuning to each child’s needs was paramount and some people seemed able to do this, but others seem to find this difficult, possibly through lack of knowledge and experience with disabled children. This left parents and sometimes their children, bewildered as to why they claimed an activity was ‘inclusive’. 

The paper has images of recreational activities as if from the child’s perspective, and whilst maintaining their anonymity, creates visual data to represent their experiences. These images were supported by interview and diary data. Evidence of well-being for these non-verbal participants included being comfortable, calm, creative, engaging with others and expressing joy. These constructs are being further explored to develop a well-being scale in a new study about the benefits of the Innowalk C Made for Movement. Moving towards a better understanding of well-being for children with complex disabilities from using the Innowalk -ORCA (cardiff.ac.uk).

For more information on this work please contact: 

Dr Dawn M Pickering, Senior Lecturer in Physiotherapy, Cardiff University’s School of Healthcare Sciences pickeringdm@cardiff.ac.uk Twitter: @DawnMPickering

References:

Pickering, D. M. 2021. Beyond physiotherapy: voices of children and young people with cerebral palsy and their carers about ‘Participation’ in recreational activities (VOCAL). PhD Thesis, Cardiff University.

Pickering, D., Gill, P. and Reagon, C. 2023. A kaleidoscope of well-being to authentically represent the voices of children and young people with complex cerebral palsy: a case study series. Disability and Rehabilitation. Available at https://www.tandfonline.com/eprint/CWZNSAXMCIAQNQKREMJD/full?target=10.1080/09638288.2023.2194680

United Nations Children’s Fund. 1989. United Nations Convention on the Rights of the Child [Online]. New York: UNICEF.