An exploration of physical activity experiences throughout the Huntington’s disease journey: supporting development of theoretically underpinned complex interventions

Abstract

Purpose

Huntington’s disease is an autosomal dominant neurodegenerative disease. Progressive physical, behavioural and cognitive impairments cause loss of independent function. Physical activity interventions are important components of comprehensive intervention strategies and may help alter the functional decline trajectory. Qualitative research has an important role to play in developing theoretically sound, well-defined physical activity interventions in Huntington’s disease.

Materials and methods

Eight focus groups were conducted with people with prodromal to late stage Huntington’s disease, caregivers (family members/formal), and healthcare professionals. An analytical coding framework was developed from the data and Levanthal’s self-regulation model to assist analysis.

Results and conclusions

Key themes were identified: evolving representations of Huntington’s disease and physical activity; varying social environment of the person with Huntington’s disease and the impact on physical activity; achieving physical activity participation while coping with the nuances of Huntington’s disease. Levanthal’s model facilitated understanding of physical activity experiences, however with progression, self-regulation of activities needs to become more collaborative with caregivers. A modified self-regulation model specific to physical activity in Huntington’s disease is presented. Using a novel approach to generate new understanding of physical activity across the Huntington’s disease lifespan facilitated development of an original and significant theoretical foundation to underpin development of a range of much needed physical activity and exercise interventions in Huntington’s disease.

Implications for rehabilitation

• Social and familial context of individuals with HD is a key consideration for health care professionals supporting physical activity participation.

• Strategies such as using physical activity as a way of achieving control and adjusting expectations can help people with HD to continue to be active.

• People with HD adapt physical activity from high level to more functional activities with symptom progression.

Keywords:

• Huntington’s disease
• physical activity
• exercise
• experiences
• complex interventions
• qualitative
• theoretical framework
• illness perception
• self-regulation model

Acknowledgements

The authors thank the participants of this research who generously gave their time, and the Huntington’s Disease Association of England and Wales and specialist care advisors for their support in organising the focus groups.

Disclosure statement

No potential conflict of interest was reported by the authors.