Voices from non-verbal disabled children to develop a well-being scale

Pickering, Dawn ORCID: https://orcid.org/0000-0003-4779-5616 and Gale, Nichola ORCID: https://orcid.org/0000-0001-5207-9863 2024. Voices from non-verbal disabled children to develop a well-being scale. Presented at: Research for children, by children and with children: Children's Research Centre, 20th Anniversary Conference, Milton Keynes, UK, 23rd October 2024.

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Abstract

This research’s aim was to explore the concept of well-being for non-verbal children to test a new observational scale, in the context of them using a robotic device. Current measures do not focus on well-being for this population, currently available questionnaires are problematic, for those who cannot communicate verbally or have a learning disability and experience epilepsy, fatigue or pain (Muris et al 2003; Verschuren et al 2016). Previously, researchers have not found a valid and reliable measure of well-being for those with complex disabilities (Mpundu-Kaambwa et al 2018). A case study design was used (Yin, 2017). Each case comprised measures, observational field notes, diaries and interviews with participants. Three visits were made to observe each child using the robotic device, where field notes were written. These were used to score the new observational well-being scale (WEBS). The diaries were kept over the period between sessions and guided the interview. The interviews and diaries were analysed thematically (Braun and Clark 2018). Ethical approval was gained, including child assent by observation of their intentional behaviours. Ten children participated. The WEBS scale indicated that the robotic device is comfortable to use, creates an observable calmness, enables creativity to develop, and facilitates engagement with people or activities. The dairies enabled the children to have their own voice which included some drawings. The interview and diary analysis led to three themes 1. Well-being: Mood and achievements; 2. Participation: Anticipation and tolerance; 3. Physical effects: Improved self-regulation and self-care. An accessible storybook has been produced from the data. To establish the content validity, this WEBS scale needs to be tested in a larger population in different contexts. Further research is planned to explore about the need for or the usefulness of a well-being scale with qualified staff.

Item Type:	Conference or Workshop Item (Paper)
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Funders:	Association of Paediatric Chartered Physiotherapists, Baily Thomas Charitable Trust
Last Modified:	24 Oct 2024 01:30
URI:	https://orca.cardiff.ac.uk/id/eprint/172231

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