The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease

Abstract Background Huntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals. Objective To evaluate the initia...

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Main Authors: Una Jones, Katy Hamana, Fran O’Hara, Monica Busse
Format: Article
Language:English
Published: Wiley 2021-04-01
Series:Health Expectations
Subjects:
Online Access:https://doi.org/10.1111/hex.13210
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spelling doaj-58ef8235fb6a46e3beee8a22287db2632021-04-27T09:24:29ZengWileyHealth Expectations1369-65131369-76252021-04-0124263864710.1111/hex.13210The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s diseaseUna Jones0Katy Hamana1Fran O’Hara2Monica Busse3School of Healthcare Sciences Cardiff University Heath Park Cardiff UKSchool of Healthcare Sciences Cardiff University Heath Park Cardiff UKScarlet Design Tec Marina Terra Nova Way Penarth UKCentre for Trials Research Cardiff UniversityNeuadd Merionnydd Heath Park Cardiff UKAbstract Background Huntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals. Objective To evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity. Design Co‐design of a physical activity tool; acceptability evaluation. Setting and participants Co‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK. Main variables studied A physical activity tool was co‐designed and used within a HD clinic. Main outcome measure Acceptability as assessed by semi‐structured interviews with members of the HD clinic. Results Forty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme. Discussion We describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources. Conclusions A simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required.https://doi.org/10.1111/hex.13210acceptabilityco‐designHuntington's diseasephysical activity
collection DOAJ
language English
format Article
sources DOAJ
author Una Jones
Katy Hamana
Fran O’Hara
Monica Busse
spellingShingle Una Jones
Katy Hamana
Fran O’Hara
Monica Busse
The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
Health Expectations
acceptability
co‐design
Huntington's disease
physical activity
author_facet Una Jones
Katy Hamana
Fran O’Hara
Monica Busse
author_sort Una Jones
title The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
title_short The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
title_full The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
title_fullStr The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
title_full_unstemmed The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease
title_sort development of pat‐hd: a co‐designed tool to promote physical activity in people with huntington’s disease
publisher Wiley
series Health Expectations
issn 1369-6513
1369-7625
publishDate 2021-04-01
description Abstract Background Huntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals. Objective To evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity. Design Co‐design of a physical activity tool; acceptability evaluation. Setting and participants Co‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK. Main variables studied A physical activity tool was co‐designed and used within a HD clinic. Main outcome measure Acceptability as assessed by semi‐structured interviews with members of the HD clinic. Results Forty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme. Discussion We describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources. Conclusions A simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required.
topic acceptability
co‐design
Huntington's disease
physical activity
url https://doi.org/10.1111/hex.13210
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