Exploring self-advocacy for children and young people with complex disabilities: How can we hear their voice?

Pickering, Dawn ORCID: https://orcid.org/0000-0003-4779-5616 2023. Exploring self-advocacy for children and young people with complex disabilities: How can we hear their voice? Presented at: APCP online webinar, Online, 15 November 2023.

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Abstract

Background Children and young people who are both non-ambulant and non-verbal are usually excluded from research. Additionally, little is known about their own well-being. Method A case study design explored the well-being of children and young people with complex cerebral palsy from observations, diaries and interviews, including those who use Augmentative and Alternative Communication. These were related to their level of participation in recreational activities. Data were analysed using Braun and Clarke's six stages of analysis, first within case, then across case comparisons were made. Three themes were identified: Participation enhancers; Champions for disabled children and young people’s emotional well-being and Hindrances to participation. Results Seven cases were completed with participants aged 9-16 years. The key theme illustrated here, relates to the children and young people's ability to self-advocate as their own champions for their well-being. Staff's ability to attune to their needs was paramount. Constructs that indicated well-being were identified which are comfort, calmness, creativity, engagement, and joy. Conclusion It is possible to hear the voices of children and young people with complex disabilities, attunement is a key skill that enables this. Taking time to listen to their alternative voices is an investment, which can enhance their well-being. These constructs of well-being are currently being further investigated in a post-doc study.

Item Type:	Conference or Workshop Item (Paper)
Date Type:	Completion
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	R Medicine > RJ Pediatrics
Funders:	Chartered Society of Physiotherapy charitable trust
Last Modified:	20 Nov 2023 11:30
URI:	https://orca.cardiff.ac.uk/id/eprint/163916

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