Joining a “co-produced” walking group can be beneficial for people with Huntington’s disease, increasing their confidence, strength, and ability to walk, a study found.
However, further research is needed to find ways to motivate Huntington’s patients to join such programs — and to keep the groups going, the investigators said.
The study, “Exploration of a Co-Production Approach to Developing a Walking Group with People with Huntington’s Disease,” was published in the journal Med One.
Physical activity, which includes exercise and recreational pursuits such as walking regularly, has general health benefits, including a positive effect on well-being and a sense of achievement. Several lines of evidence indicate that exercise is beneficial for this particular patient population.
However, while such physical activity is often promoted by physicians, only a limited number of Huntington’s patients actually carry through with it.
With Huntington’s disease, motor problems, cognitive dysfunction, and a reduced ability to acquire new psychomotor skills can all become impediments to launching and maintaining an effective exercise program. Disease-related depression and apathy also can hamper patients’ efforts to regularly participate in physical activity.
“The triad of motor, behavioural and cognitive impairments related to [Huntington’s disease] is therefore challenging when physiotherapists and other health professionals support people to remain as functionally independent for as long as possible,” the researchers said.
Therefore, “co-production approaches,” in which patients and healthcare professionals interact with organizations outside of the healthcare system, may be necessary for the promotion and uptake of physical activity in people with Huntington’s.
Walking groups have proven to hold a wide range of health benefits for the general population. Now, researchers from Cardiff University, in the U.K., evaluated the experiences of people who co-produced a walking group for individuals with Huntington’s.
The walking group included three patients, the local specialist Huntington’s disease advisor (sHDA), the research team, and two project officers from Let’s Walk Cymru (LWC) — a Welsh government-funded initiative that aims to support and develop new walking groups across Wales.
Walks took place on a weekly basis for eight weeks, and then on a fortnightly basis for 12 weeks.
The Physical Activity Readiness Questionnaire was used to screen participants for suitability of walking. “The minimum requirements for walkers were: ability to walk independently with or without a walking aid for 20 min; able to independently get up from the floor,” the researchers said.
After the eighth walk, the team conducted semi-structured interviews with the participants, including patients and co-organizers. The questions focused mainly on the personal experiences of the participants, including “hopes and concerns, feelings before and during the walks, social aspects and future of the walking group.”
All participants thought the idea of a walking group was “good and achievable,” with the social aspect of the group perceived as positive. “I understood what’s he’s coming from, he understands where I was coming from,” said one participant, identified only as Sally, describing a mutual understanding between patients with the same disease.
Additionally, the benefits of the walking group were perceived to be both mental and physical. Participants also reported increasing confidence. George, another of the patient participants, said he felt the walking group motivated him to get out and meet other people. “ I am normally in a better frame of mind when I finish the walks,” he said.
John, a third participant, said he felt his confidence, strength, and ability to walk properly again were coming back.
The researchers identified several barriers to launching the group, including determining transport to the walk locations, finding a geographically convenient place to walk, and dealing with participants’ lack of motivation.
Other Huntington’s-specific barriers also were cited that directly related to the progressive nature of the disease. One patient did not want his child to come along, fearful that younger people would be negatively impacted by seeing someone with more advanced symptoms of the disease. This man did not want his daughter “… thinking that’s what I am going to be like in 10 years’ time … or that’s what she’s going to be like in 25 years’ time.”
The patients enjoyed the positive social aspects of being in a group and expressed the fun that could be had being with other people. “I enjoy the walk more if there’s more than me there,” George said.
However, the participants with Huntington’s said there were too many healthcare professionals in comparison with patients. Some felt the focus was not on co-production of a walking group but instead on completion of the study. “… lots of chiefs and a few Indians ….,” one patient said.
Finally, everyone said the walking group should continue following the study, but that more needed to be done to motivate participants to continue. Some patients recommended the integration of walks with clinic visits, and advertising for additional participants.
Notably, the walking group did not continue following the study’s conclusion.
“A supported walking group was perceived as enjoyable, beneficial, and motivational for people with HD. Issues related to apathy, diminished planning skills, social stigma and motor problems specific to HD may have limited potential participants joining the study and impacted on the continuation of the walking group,” the researchers said.
The team said more research is necessary “to adapt models of co-production for people with a long-term complex condition.”