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The authenticity of using visual data to represent the emotional well-being of children and young people with cerebral palsy

Pickering, Dawn, Gill, Paul, Reagon, Carly and Davies, Jane 2019. The authenticity of using visual data to represent the emotional well-being of children and young people with cerebral palsy. Presented at: American Association of cerebral palsy and developmental medicine, Anaheim, USA, 18-21 September 2019. -.

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Background and objectives Whilst the evidence base supports the physical health benefits, less is known about the emotional wellbeing effects from participation in recreational activities for children and young people with cerebral palsy. Especially for those who need assistance to walk, are non-ambulant or have difficulty with communication and learning. In Wales, although investment in adapting sporting activities has increased, wider participation in recreational activities remains limited for this group. This lack of choice for meaningful participation for children and young people with cerebral palsy, can lead to less participation in adulthood. This is thought to reduce their health related quality of life. The objectives were to explore how children and young people with cerebral palsy and their carers viewed, experienced and chose their level of participation in recreational activities and how they think this impacts upon their emotional wellbeing. Study Design Comparative case study design- Those who participated a lot and those whose participation was limited. Study participants and setting 7 children and young people were recruited via schools, charities and community groups (age range 9-16 years, Levels III-V Gross motor Function Classification System: 4 at IV, 2 at III, 1 at V; Communication Function Classification System: 4 at IV, 2 at III, 1 at V; 4 boys, 3 girls; 4 who participated a lot and 3 whose participation was limited). Materials and methods A qualitative approach was devised. Each case study was comprised of 2 semi-structured interviews 12 weeks apart, a diary written in between, plus some observations at one of their usual activities during this time. Visual images were taken during the observations as well as field notes written. Some parents took images to add to the diary. Two of the participants were interviewed via their communication aids which gave insight into their experiences and choices. However to ascertain their views it had to be reported by proxy via the parents, as it was not possible to probe further with their limited vocabulary. The 5 who were not able to communicate directly were observed and the parents were interviewed. The data was managed with NVIVO and analysed according to Braun and Clark’s six stages of thematic analysis. Results The 7 cases generated 212,843 words, 220 images, from 18 hours of interviews, 7 diaries and 15 hours of observation across both data sets. Themes were identified that reflected both Intrinsic factors with their Idiosyncratic ways to communicate well-being and Extrinsic factors including People’s Attitudes towards Disabled Children. Those in the participatory group had a vast range of experiences that supported a positive emotional well-being state. These activities included surfing, skiing, bike riding, Race Running, swimming, horse riding, uniformed clubs, trampolining and some craft activities. These were attributed to innovative designs. Those who participated less encountered barriers from pervasive ‘Can’t do’ attitudes and environments or equipment that had not been adapted for their needs. Only 1 child had evidence of the Leuven Scale for emotional well-being and involvement for non-verbal children, being used in school. Conclusion/Significance The case study method enabled rich data to be collected to represent their views, experiences and choices. More needs to be developed to reliably capture this group of children and young people’s emotional well-being.

Item Type: Conference or Workshop Item (Poster)
Status: Unpublished
Schools: Healthcare Sciences
Subjects: R Medicine > RJ Pediatrics
Funders: Chartered society of physiotherapy charitable trust
Date of Acceptance: 31 March 2019
Last Modified: 26 Jun 2022 07:05

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