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Children and youth with cerebral palsy's(GMFCS III-V)voices about the well-being effects from their level of participation in recreational activities

Pickering, Dawn, Gill, Paul and Reagon, Carly 2021. Children and youth with cerebral palsy's(GMFCS III-V)voices about the well-being effects from their level of participation in recreational activities. Presented at: 2021 CPISRA Conference on Physical Activity and Health for People with Cerebral Palsy or Acquired Brain Injury, Virtual, 8-11 December 2021.

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Children and youth with cerebral palsy with mobility, communication and learning challenges are underrepresented in literature. 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. The two aims were to explore the views, experiences and choices for children and youth's level of participation in recreational activities and their perceptions of the effect of this upon 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. 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. 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 and develop a reliable well-being measure.

Item Type: Conference or Workshop Item (Paper)
Status: Unpublished
Schools: Healthcare Sciences
Subjects: R Medicine > RJ Pediatrics
Funders: Chartered Society of Physiotherapy Charitable Trust
Date of First Compliant Deposit: 14 December 2021
Date of Acceptance: 2021
Last Modified: 30 Jul 2022 08:35

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