Background Physical activity (PA) has great potential for symptom management and improved quality of life in Huntington’s disease (HD). There is a lack of underpinning theory informing existing complex PA interventions utilised in HD research. Qualitative exploration of PA in HD is critical to inform development of such theoretically informed interventions.
Aim To explore how living with Huntington’s disease (HD) impacts on the experience of physical activity (PA) across the stages of the disease.
Methods Eight focus groups were conducted across the UK. Participants included people with prodromal to late stage HD, caregivers (family members/formal), healthcare professionals. Data were analysed using a framework analysis method. An analytical coding framework was developed from the data and the self-regulation model (SRM) to assist analysis.
Results Key themes include ‘the evolving representations of HD and physical activity’, ‘the varying social environment of the person with HD and the impact on physical activity’ and ‘achieving PA participation while coping with the nuances of HD’. The SRM facilitated understanding of PA experiences; self-regulation of activities becomes more collaborative with the caregiver as HD progresses.
Conclusion A modified SRM which accounts for increased collaborative regulation of representations and PA participation as HD progresses over time is suggested. Social and familial context of individuals with HD is a key consideration for health care professionals supporting PA participation. Strategies such as using PA as a way of achieving control, and adjusting expectations can help people with HD continue to be active and adapt PA from high level to more functional activities with symptom progression. The findings provide a theoretical foundation to underpin development of a wide range of PA management and research interventions in HD and have been used in development of the currently trialled interventions (clinical trials.gov NCT03344601).
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