A newly-funded project seeks to empower people with Huntington’s disease to become stakeholders in their own walking groups as a way to maintain the benefits of exercise.
Dr Una Jones; Katy Hamana; Professor Monica Busse; Dr Melanie Jones; Kay Holmes; Dr Sonia Vougioukalou; Professor Anne E Rosser
Previous research by the Huntington’s disease (HD) Physiotherapy group at Cardiff University has shown that exercise is feasible for people with HD and that it improves fitness. However, we know that it may be more difficult for people with HD to participate in regular physical activity because of the complexities caused by physical, cognitive and behavioural symptoms. Indeed when we shared our positive findings with people with HD at the ‘Healthy Living with HD’ open day (November 2015), they said that they enjoyed doing exercise during research studies, but when the study ended, so did the exercise! We wanted to try and address this feedback and are now conducting a project to develop walking groups for people with HD.
Competitive funding has been received (April 2016) from the Wellcome Trust and Cardiff University to do this. Through this exciting project, we aim to set up one or two walking groups that, by the end of the project, will continue to run by themselves, so that people can carry on being physically active without the need for our input. It is very important that the walking groups are designed and set up in such a way as to enable them to become self-sustaining.
To help us with this we have recruited experts in developing walking groups, and HD experts to the team. We have had our first meeting with a number of people with HD, Melanie Jones from Let’s Walk Cymru and Kay Holmes, the Huntington’s Disease Association (HDA) specialist advisor for South Wales and Herefordshire. From this meeting, we designed the first walk, which will take place in August 2016 in Bute Park, Cardiff. Over the period of the first eight walks, we will be taking measurements such as heart rate, level of physical activity, and how confident people are at doing certain activities.
Group feedback design
We will also collect recordings of discussions with people in the group to find out how they feel about the walking group and how the group could carry on independently. This will help us with making necessary adjustments to the design of the groups over the first 8 walks, so that by the end of those walks the groups can successfully continue to run by themselves.
Patient involvement key to success
This project was developed from feedback that people with HD have given us about exercise. The walks are being designed by people with HD and their ideas will be used to spread the news about these novel walking groups. We have research evidence that, with the right conditions and support, it can be both safe and beneficial for people with HD to do exercise. By bringing together people with HD and researchers, they can pool their expertise to develop walking groups with real potential to become self-sustaining. Beyond this, if successful, we hope this model could be used to organise similar walking groups for people with HD anywhere in the world.
We will keep you updated with progress from the walks and fingers crossed for some dry days in August!
– Article contributed by Dr Una Jones