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Promoting Physical Activity in Huntington's Disease: Co-Design of a Care Partner Resource.

Una Jones1, Katy Hamana1, Monica Busse2

  • 1School of Healthcare Sciences, Cardiff University, Cardiff, UK.

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Summary

A new resource was co-designed for Huntington's disease (HD) care partners to help promote physical activity, addressing low exercise levels in individuals with HD. The resource aims to empower care partners and support people with HD in maintaining fitness.

Keywords:
Co-designHuntington’s diseasecare partnerexercisephysical activity

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Area of Science:

  • Neurology
  • Physical Therapy
  • Health Promotion

Background:

  • Clinical guidelines advocate for exercise in Huntington's disease (HD) to enhance fitness and motor function.
  • Physical activity levels are notably low among individuals with HD.
  • Care partners often facilitate physical activity promotion but lack adequate support and resources.

Purpose of the Study:

  • To co-design a practical resource for care partners of people with HD.
  • To support care partners in effectively promoting physical activity for individuals with HD.

Main Methods:

  • A four-step co-design methodology was employed.
  • An online workshop engaged five care partners to identify needs and experiences.
  • A prototype resource was developed and refined based on user testing feedback.

Main Results:

  • An accessible, image-based resource was created, offering activity planning tips, safety information, and exercise examples.
  • User testing highlighted the need for time-categorized activities (10, 20, 30 minutes) and guidance on activity maintenance.
  • The resource was translated into seven languages.

Conclusions:

  • A multilingual resource for care partners was successfully developed to promote physical activity in Huntington's disease.
  • User feedback indicated increased confidence in resource utilization and respect for patient autonomy in activity planning.
  • Further research is required to assess the resource's impact on physical activity levels and care partner burden.