More Research Concluding Exercise Programs Should Be Focused on the Individual: A Qualitative Study Looking at Independent Exercise Programs for People with Parkinsons and Huntingtons Disease
Quinn, L., Busse, M., Khalil, H., Richardson, S., Rosser, A., & Morris, H. (2010). Client and therapist views on exercise programmes for early-mid stage Parkinson's disease and Huntington's disease. Disability and Rehabilitation, 32(11), 917-928.
Blythe Hiss, M.S., RCEP
Due to the length of time that someone lives with Parkinson's and Huntington's Diseases (PD and HD, respectively), and the need to find more cost-effective approaches to life-long management of the disease and its effects, researchers wanted to look at independent exercise programs as an alternative to direct (expensive) one-on-one intervention involving physical therapy. The researchers acknowledged the critical importance of the physical components of an exercise program in order to determine success, but here, they chose to focus on the approach, belief system, and attitudes of both the therapists and the clients in order to provide additional insight into what works related to the design, implementation, and evaluation of these programs.
Eight physical therapists (PTs) were recruited from a variety of settings. Each had between 4 and 25 years of experience with neurodegenerative diseases and was in a senior or supervisory role.
Therapists were divided up into two groups for structured focus group interaction. Focus group topics covered their experiences in home exercise program design, as well as the most important factors for designing a program, including how to address motivation, compliance, and safety.
The ten clients with PD/HD were in early to mid-stage and were contacted through existing research databases. Clients were scheduled for individual interviews at their homes and on their own schedule. The interviews covered the topics of impact of disease, as well as non-disease specific issues related to their participation in a home exercise program, and current and past experiences with exercise programs, regardless of location (not just home-based).
The overriding theme for both clients and therapists was that exercise is beneficial for managing symptoms related to the condition. For clients, this belief seems to stem from their actual experiences.
Therapists indicated that they encourage home exercise programs in written form, though a few also went so far as to assist in locating local programs or centers. Some also encouraged the use of home exercise videos.
Through both group interactions, barriers fell into three categories:
- Most clients did not feel that having PD/HD affected their ability to exercise. The two that did think it affected them related to stiffness, fatigue, and concentration.
- Most clients also felt they had a lack of knowledge about exercises that are appropriate for their specific disease and did not feel they had been provided information that was specific.
- Therapists did report educating clients early on about the importance of exercise, but there was no suggestion that they felt they provided disease-specific exercise information to the clients.
- Therapists did not feel that simply having PD/HD would prohibit a person's ability to exercise (much like the clients), though they felt that cognitive impairments may be the primary limiting factor to performing exercises and complying with an independent program, specifically referring to memory and judgment impairments.
- Clients were not worried about safety, but therapists focused here, acknowledging that the individual home environment must be factored in, as well as making the exercises relative to the client's individual abilities.
Location of exercise
- Both groups acknowledged a social component to exercising, and clients specifically referred to it as feeling "normal" when exercising in a group or gym and did not feel having PD/HD would keep them from going to a gym.
- Therapists discussed social factors more in terms of the potential difficulty of someone in the early stages of PD/HD seeing others in later stages and suggested that in PD-specific exercise groups, that the clients be grouped appropriately.
- Though clients felt generally comfortable exercising in a gym, therapists did express the importance of having someone there to help adjust equipment.
In addition, another theme addressed was motivation. Both groups felt it was a key issue, though clients felt it was their understanding of the relevance and usefulness of a specific exercise that was most critical, while therapists thought just initiating the home program was most challenging, but acknowledged the importance of the client knowing the explicit reason that he or she is doing an exercise. Clients thought having targets and making exercises more focused and relevant would be useful. Therapists thought working with clients in the early stages was essential and that educating them early on the benefits would be more motivating. Some therapists suggested the importance of a support system for the client as well. Both groups did discuss the importance of a simple design for the program, specifically breaking complex exercises into simple tasks.
In addition to the limitations in sample size, there may be two more potential limitations to consider. Since therapists were divided into two focus groups, could responses have been affected? Would it be possible for a topic to come up in discussion in one group that caused a therapist to answer a certain way or think of something that he or she hadn't considered before, while members of the other group were not exposed to the same interaction?
Also, since most therapists received their PT education more than ten years ago, the researchers acknowledged the possibility of this gap in current education reflecting something pertaining to exercise prescription; however, all therapists were active in their continuing education.
A few interesting (and very positive) points were:
- Clients believed that exercise was beneficial for symptom management and that belief was based on experience.
- A few therapists indicated that they actually went so far as to assist clients in locating local programs or centers.
- Therapists suggested that PD-specific exercise groups be grouped appropriately according to stage of disease in terms of the difficulty of someone in the early stages of PD/HD seeing the decreased function of someone in the later stages. This may be a good tip for existing programs for PD/HD or similar conditions that have not considered this before.
- Though clients were not worried about safety, therapists felt that individual home environment must be factored in, as well as making the exercises relative to the client's individual abilities. This suggests a home visit from a PT. That could be so extremely beneficial in many ways. Do PTs do that these days?
Researchers concluded that "therapists should work in collaboration with clients to evaluate their individual considerations, identify barriers to exercise and design a client-specific programme that is acceptable and feasible for the client." Individual and client-specific: These words seem perfectly applicable to both the clinical and applied medical, health, and fitness world and deserve and require more attention and focus.