H29 Co-design of a physical activity volunteer training e-kitbag for Huntington's disease with stakeholders (PIVOT-HD)

Background Huntington’s disease (HD) physical activity buddies within and external to the HD community who support each other to be active could positively impact physical activity engagement, social interaction, raise awareness and reduce stigma. The benefits of physical activity in HD have been evidenced by research. This project aims to co-design, create and evaluate a digital training resource for physical activity buddies to support physical activity of people with HD in their local communities. Method A co-design workshop was held with people gene positive for, or who have early-stage HD, participants from the volunteer community, the HD Association of England and Wales (HDA) and digital technology experts. Results The co-design workshop findings suggest stakeholders would prefer a ‘fun’, ‘interactive’ resource that includes a mix of podcasts, filmed video clips, written information and links to other existing resources about HD, and is accessible on a smart phone or tablet. The PI will work with digital technology experts, HD community to create the content and resource. The resource will be evaluated. Six volunteers will pilot it and share their experiences and perceptions of usability in an online focus group, and completing a survey pre and post using it to capture changes in confidence and intention to support someone with HD as a physical activity buddy, and knowledge of HD. The resource may then be refined. Conclusion The resource will be complete November 2022 and incorporated into HDA resources, Disability Sport Wales Inclusive training for volunteers and an ‘Active MotiMates’ mobile application