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Beyond physiotherapy: voices of children and young people with cerebral palsy and their carers about ‘Participation’ in recreational activities (VOCAL)

Pickering, Dawn 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.
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Abstract

This thesis is about children and young people with cerebral palsy and the emotional well-being impact from their level of participation in recreational activities. A literature review highlighted the gap in knowledge for non-verbal disabled children with limited mobility, who are usually excluded from research studies. They also have less choices for recreational activities than typically developing children. Very little is known about these disabled children’s perceptions of their own well-being. By centrally positioning their voices at the centre of the enquiry, their agency was heard to facilitate their social justice. The research question explored how children and young people with cerebral palsy and their carers viewed, experienced and chose their level of participation in recreational activities. Evidence of their well-being, was brought out in the analysis. A comparative case study design was developed using visual methods, this enabled the storylines of the children to be socially constructed from the evidence of the social forces at play, in the activities where they were positioned. There were two groups, a Participatory Group (N=4) and a Limited Participatory Group (N=3). The disabled children and young people were aged nine to sixteen years and were supported by their parents in the data collection. Each case included two interviews at the beginning and end of twelve weeks, during which time they kept a diary, observations were carried out at one of their usual activities within this time period. Photographs were taken by the parent and the researcher for context. These photographs were used to elicit discussion in the second interview. The seven cases were analysed by an interpretative approach, using Braun and Clark’s six stages of analysis. Pseudonyms were chosen and care was taken to anonymise photographs used. First the Participatory Group were analysed, then the Limited Participatory Group, then across case analysis was carried out. Three overall themes were identified: 1. Participation enhancers; 2.Champions for disabled children’s emotional well-being; 3.Hindrances to participation. Innovative designs, advocacy and positive attitudes came out as key features that enhanced participation and pain, mood, epilepsy, as well as lack of choices and perceived negative attitudes, hindered participation. Positioning theory has been applied and adapted to represent the well-being of disabled children and young people with a kaleidoscope. This relates to the both their physical positioning and agency to choose to participate, or not. This proposed ‘Kaleidoscope of Well-being’ suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates to promote their needs, with specialist equipment. The non-verbal children also showed they could choose not to participate, even when opportunities were offered to them, to determine their own storylines. Those who enjoyed participation included physical activities such as bike riding, surfing, skiing, and trampolining, but there were less choices in the arts and cultural based activities, which were more sensory based. Having the social confidence to relate to non-verbal children was seen as helpful, but there were many examples where this was missing, perceived as negative attitudes. Currently the needs of these disabled children and young people are overlooked, reducing their social justice as valued citizens in society. Policy makers, designers of equipment and environments could take notice of these findings, to consider how to move the boundaries further of what might be possible to increase the choices for non-verbal children with mobility limitations. Practitioners should consider how they include participation as an outcome from their interventions, which at a minimum requires signposting to available choices. There is a need to explore how health and social care professionals perceive the role of advocacy with disabled children and young people, to enhance the children’s participatory opportunities. Further research requires a cross-disciplinary approach to address the complexities of non-mobile, non-verbal disabled children and young people’s participation in recreational activities. This should focus on increasing their choices, to enhance their well-being and visual methods should be developed further to illuminate the experiences of non-verbal children.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Healthcare Sciences
Date of First Compliant Deposit: 5 May 2021
Last Modified: 06 Jul 2021 12:57
URI: http://orca.cardiff.ac.uk/id/eprint/140933

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