A ‘Kaleidoscope of well-being’ to represent the experiences of non-verbal, physically disabled children and young people’s participation in recreational activities.

Introduction A literature review highlighted a gap in knowledge for non-verbal disabled children with limited mobility. Very little is known about their perceptions of their own well-being. Social justice was promoted by centrally positioning their different voices at the centre of this enquiry, based upon positioning theory. Patients and methods The participants were 9-16 years and Levels III-V on the GMFCS/ CFCS, supported by their parents. The research question explored how children and young people with cerebral palsy and their parents viewed, experienced, and chose their level of participation in recreational activities, to benefit their well-being. A comparative case study design was developed with two groups, a participatory group (4) and limited participatory group (3). Results Seven cases were analysed utilising an interpretative approach, using Braun and Clark’s six stages of thematic analysis. Three overall themes were identified from the findings: 1. Participation Enhancers, 2. Champions for disabled children and young people's well-being; 3. Hindrances to participation. Positioning theory was adapted to include the non-verbal children’s storylines, represented by a ‘Kaleidoscope of Well-being’. This proposes that well-being can fluctuate in different environments, influenced by the social forces of advocates who promote their needs, with specialist equipment. Participants also showed they could choose not to participate, showing their own agency. Conclusion Policy makers and designers of equipment and environments should consider how to increase the choices of recreational activities for non-verbal children. There is a need to explore how professionals perceive their role of advocacy with disabled children and young people