Promoting physical activity in Huntington's Disease: co-design of a care partner resource

Jones, Una ORCID: https://orcid.org/0000-0001-7156-8531, Hamana, Katy ORCID: https://orcid.org/0000-0001-5213-253X and Busse, Monica ORCID: https://orcid.org/0000-0002-5331-5909 2024. Promoting physical activity in Huntington's Disease: co-design of a care partner resource. Journal of Huntington's Disease 10.3233/JHD-240014

Preview

PDF - Accepted Post-Print Version Download (882kB) | Preview

Abstract

Background:Clinical guidelines recommend that people with Huntington’s disease (HD) should exercise to maintain/improve fitness and motor function, yet physical activity levels remain low in this group. Promotion of physical activity is often via care partners with little evidence that they are supported in this role. Objective:The aim was to co-design a resource for care partners of people with HD to support promotion of physical activity. Methods:A four-step co-design approach was used to develop a care partner resource. Five care partners took part in an online workshop exploring experiences and the knowledge, support and skills needed by care partners to promote physical activity. A co-design team (n = 7) developed a prototype that was user tested by three people who had attended the workshop. Findings from user testing were used to develop the final resource. Results:An easy to read, image-based prototype was developed that contained tips on planning activity, safety and activity examples. User testing identified the need for grouping of activities suitable for 10, 20, and 30 minutes of available time, information on maintaining and improving activity and re-organization of information to support engagement of activity. Conclusions:A resource for care partners that has been translated into seven languages was developed to promote physical activity. User testing indicated confidence in using the resource and appreciation of the autonomy provided to the person with HD to plan activities. Further work is needed to evaluate the impact of the resource in promotion of physical activity and the impact on care partner burden.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Healthcare Sciences Medicine Centre for Trials Research (CNTRR)
Publisher:	IOS Press
ISSN:	1879-6397
Date of First Compliant Deposit:	22 July 2024
Date of Acceptance:	1 July 2024
Last Modified:	25 Jul 2024 01:44
URI:	https://orca.cardiff.ac.uk/id/eprint/170828

Actions (repository staff only)

Edit Item