Jones Una, Hamana Katy, O'Hara Fran, Busse Monica
School of Healthcare Sciences, Cardiff University, Heath Park, Cardiff, UK.
Scarlet Design, Tec Marina, Terra Nova Way, Penarth, UK.
Health Expect. 2021 Apr;24(2):638-647. doi: 10.1111/hex.13210. Epub 2021 Feb 13.
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.
To evaluate the initial acceptability of a co-designed tool used within a HD clinic to promote physical activity.
Co-design of a physical activity tool; acceptability evaluation.
Co-design included people with HD and health-care professionals. Acceptability was evaluated in a HD clinic in the UK.
A physical activity tool was co-designed and used within a HD clinic.
Acceptability as assessed by semi-structured interviews with members of the HD clinic.
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.
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.
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.
亨廷顿舞蹈症(HD)是一种导致运动、行为和认知障碍的遗传疾病。HD患者身体活动水平较低,而医疗保健专业人员支持不足可能会使这一情况更加严重。
评估在HD诊所使用的共同设计工具对促进身体活动的初步可接受性。
身体活动工具的共同设计;可接受性评估。
共同设计包括HD患者和医疗保健专业人员。在英国的一家HD诊所评估可接受性。
共同设计了一种身体活动工具并在HD诊所使用。
通过对HD诊所成员进行半结构化访谈评估可接受性。
40人前往HD诊所;19人获得了身体活动建议。确定了围绕谁、在哪里以及如何促进身体活动的主题;益处和障碍的概念贯穿于每个主题。
我们首次描述了针对HD的特定身体活动工具的共同设计。我们相关的可接受性研究强调了在复杂的神经退行性疾病中进行身体活动个性化规划的重要性。感知到的障碍是时间和对当地资源缺乏了解。
一个简单的工具可以支持与HD患者进行关于身体活动的对话,并有助于设定个性化目标。需要探索在社区环境中使用HD身体活动工具,并为经常与HD患者接触的医疗保健专业人员和支持人员开发支持系统。