H009 Acceptability of an online support group to improve physical activity for people with Huntington’s disease: preliminary results of a qualitative study

<h3>Background</h3> Huntington’s disease (HD) is a progressive neurodegenerative condition which impacts physical mobility and psychological wellbeing. Sustaining physical activities for individuals with HD accordingly poses multiple difficulties. <h3>Aims</h3> This study assessed acceptability of a social media-based activity log intervention conducted by the Chinese HD Association over two years. <h3>Methods</h3> Participants (n=15) were HD family members who were either HD gene-carriers (premanifest or manifest), or caregivers providing physical, psychological or practical support to a relative with HD. Interviews were conducted individually or in small focus groups of 2-3 participants. The interview guide was structured using the seven-domain Sekhon’s Theoretical Framework of Acceptability, with an additional domain to explore service users’ views regarding further enhancement of support for engagement in physical activity for people with HD. Data analysis was via five-step Framework Analysis. <h3>Results</h3> In line with the framework used, eight themes were developed. Participants reported that sign-in activities often positively impacted on HD individuals’ engagement in exercise, with key benefits around positive and consistent modelling from activity leads and motivation from seeing other group members succeed. Assistance and encouragement with exercises and activity sign-ins was required from caregivers. Findings also highlighted a need for better education around exercise in HD and a call for psychological support for caregivers and gene-carriers in China. <h3>Conclusions</h3> The intervention was considered acceptable, supporting people with HD to remain physically active. Improvements to the intervention were identified alongside potential for support in other areas, e.g. psychological wellbeing, to further increase physical activity engagement among service users.

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Publication Details

Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.239
Primary Topic
Genetic Neurodegenerative Diseases
Type
article
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article

H009 Acceptability of an online support group to improve physical activity for people with Huntington’s disease: preliminary results of a qualitative study

Sarah Gunn, Cao Xi, Nan Yang, Shu Xiaoyi
Genetic Neurodegenerative Diseases
article

H009 Acceptability of an online support group to improve physical activity for people with Huntington’s disease: preliminary results of a qualitative study

Sarah Gunn, Cao Xi, Nan Yang, Shu Xiaoyi
article en

Abstract

<h3>Background</h3> Huntington’s disease (HD) is a progressive neurodegenerative condition which impacts physical mobility and psychological wellbeing. Sustaining physical activities for individuals with HD accordingly poses multiple difficulties. <h3>Aims</h3> This study assessed acceptability of a social media-based activity log intervention conducted by the Chinese HD Association over two years. <h3>Methods</h3> Participants (n=15) were HD family members who were either HD gene-carriers (premanifest or manifest), or caregivers providing physical, psychological or practical support to a relative with HD. Interviews were conducted individually or in small focus groups of 2-3 participants. The interview guide was structured using the seven-domain Sekhon’s Theoretical Framework of Acceptability, with an additional domain to explore service users’ views regarding further enhancement of support for engagement in physical activity for people with HD. Data analysis was via five-step Framework Analysis. <h3>Results</h3> In line with the framework used, eight themes were developed. Participants reported that sign-in activities often positively impacted on HD individuals’ engagement in exercise, with key benefits around positive and consistent modelling from activity leads and motivation from seeing other group members succeed. Assistance and encouragement with exercises and activity sign-ins was required from caregivers. Findings also highlighted a need for better education around exercise in HD and a call for psychological support for caregivers and gene-carriers in China. <h3>Conclusions</h3> The intervention was considered acceptable, supporting people with HD to remain physically active. Improvements to the intervention were identified alongside potential for support in other areas, e.g. psychological wellbeing, to further increase physical activity engagement among service users.

University College London Hospitals NHS Foundation Trust (GB), University of Leicester (GB), Shanghai University of Sport (CN), Huntington's Disease Association (GB), Chinese Medical Association (CN), University College London (GB)
Openalex Percentile: Top 84%
Genetic Neurodegenerative Diseases
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