A study protocol to develop the domains of an observational well-being scale (WEBS) for non-verbal children and young people with cerebral palsy from using the Innowalk.

Pickering, Dawn ORCID: https://orcid.org/0000-0003-4779-5616, Pickles, Timothy ORCID: https://orcid.org/0000-0001-7743-0234 and Shiress, Ted 2022. A study protocol to develop the domains of an observational well-being scale (WEBS) for non-verbal children and young people with cerebral palsy from using the Innowalk. Presented at: National Patient Reported Outcome Measures, Online, 14 - 15 June 2022.

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Abstract

Cerebral palsy (CP) is a group of permanent disorders of the development of movement and posture often accompanied by disturbances of communication and behaviour. For those with more severe physical disabilities, their ability to participate in physical activities is limited, which includes those with walking limitations. It is known that adults with CP are prone to early development of chronic diseases such as a cardiovascular disease. Increasing physical activity levels improves well-being across the general population, including children without disabilities. Whether this is so for those children who have mobility limitations and cannot communicate their feelings is currently unknown. It is also unknown whether and how their well-being and quality of life can be influenced. Well-being in this context refers to how children with CP are able to indicate they are enjoying life in their environments-‘thriving or surviving’ which directly impacts upon their perceived quality of life. This research will observe children using the Innowalk, a robotic device as one context for them to indicate their well-being. The National Institute for Health and Care Excellence (2017) guidelines for the management of CP included recommendations to use validated measures to monitor their mental health and well-being, however available questionnaires are problematic for those who cannot communicate verbally or have a learning disability and experience epilepsy, fatigue or pain. Additionally, Mpundu-Kaambwa et al (2018) did not find a valid and reliable measure of well-being for those with complex disabilities. However, a recent development by Oliver et al (2020), the Be-Well checklist for children with profound disabilities, has informed this study. Profound disabilities refer to those children with severe learning disabilities and complex needs. Other existing well-being measures will be reviewed in a co-productive way with children and their parents, to develop the domains for this new observational well-being scale for children with CP. This research will use the context of the Innowalk to observe well-being indicators in the children’s responses. Problem: The lack of a valid and reliable measurement scale for the well-being of children and young people with complex CP. Interest: Developing and testing a new scale by observing the well-being of non-ambulant and non-verbal children and young people with CP when using the Innowalk. Context: Special School setting for children and young people with CP Outcome: The domains established will enable the content validity to be evaluated in larger funded study to test the psychometric properties of the WEBS.

Item Type:	Conference or Workshop Item (Poster)
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	R Medicine > RJ Pediatrics R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Last Modified:	30 Nov 2022 08:02
URI:	https://orca.cardiff.ac.uk/id/eprint/150489

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