VOCAL: Non-verbal children and young people with cerebral palsy's voices about the well-being effects from their level of participation in recreational activities.

Pickering, Dawn ORCID: https://orcid.org/0000-0003-4779-5616 2022. VOCAL: Non-verbal children and young people with cerebral palsy's voices about the well-being effects from their level of participation in recreational activities. Presented at: WARC research seminar, Online, 22nd Feb 2022.

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Abstract

Children and young people with cerebral palsy who have mobility, communication and learning challenges are underrepresented in the literature. They also have less choices for participation in recreational activities than their peers. The research question explored how they and their parents viewed, experienced, and chose their level of participation in recreational activities, to benefit their well-being. A qualitative approach was developed using an exploratory comparative case study design using visual methods, seeking to position their voices centrally to the enquiry. The participants were aged nine to sixteen years. Each case included two interviews at the beginning and end of twelve weeks, during which time the parents also kept a hand-written diary. Observations were also carried out during this time of their intentional behaviours looking for evidence of their well-being. Seven cases were analysed using Braun and Clark’s six stages of thematic analysis. Three themes were identified 1. Participation Enhancers; 2. Champions for disabled children and young people's well-being, including self-advocacy; 3. Hindrances to participation. The findings were shared with the children using a Powtoon video and this illustration of the study’s title “VOCAL”. Positioning theory was applied, which included a triad of their position, social forces, and their own stories, without spoken language. Their storylines were socially constructed from the evidence of the social forces at play, at the recreational activities where they were positioned. Positioning theory has been further adapted to include the children’s storylines, represented by a ‘Kaleidoscope of Well-being’. This suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates who promoted their needs, with specialist equipment. Participants also showed they could self-advocate, to determine their own storylines, by choosing not to participate as shown by their intentional behaviours. Indications of well-being remain subjective, further work is being carried out to establish the well-being domains for a well-being measure.

Item Type:	Conference or Workshop Item (Other)
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	R Medicine > RJ Pediatrics
Funders:	Chartered Society of Physiotherapy Charitable Trust
Last Modified:	07 Nov 2022 10:54
URI:	https://orca.cardiff.ac.uk/id/eprint/133909

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