Community-based exercise programming for individuals with Parkinson’s disease: a qualitative study

Background Parkinson’s disease (PD) is a progressive neurological disorder that significantly impacts individuals, their families, and the healthcare system. In addition to drug therapies and surgical interventions, exercise interventions have shown promise for improving both motor and non-motor symptoms in PD. This study aimed to investigate the perspectives of individuals with PD, care partners, and program providers about a community-based exercise program for PD. Methods Individuals with PD (Hoehn & Yahr stages I-III), on a stable medication regime, who had participated in a PD-specific community-based exercise program twice weekly for at least 12 weeks, along with their care partners and program providers were recruited to the study. Using a phenomenological qualitative study design, we conducted in-depth interviews with individuals with PD (n = 17), their care partners (n = 7), and program providers (n = 3). The interviews, lasting 20–50 minutes, were conducted from January 2024 to May 2024. Data were analyzed using interpretative phenomenology analysis framework, and findings were mapped onto a behaviour-change model. Two patient advisors and their care partners helped with data analysis and interpretation. Results Participants consistently identified the PD-specific nature of the program and the benefits of exercising in a group as key motivators for participation. Pre-program challenges included difficulties obtaining a diagnosis, coping with the impacts of PD (such as a sense of loss, adapting to non-motor symptoms, and managing medication side effects), and finding motivation to exercise (self-motivation or encouragement from family/friends). Post-program outcomes included symptom improvement and positive experiences with group exercise, including mutual motivation, community support, and reduced self-consciousness. These positive experiences led participants to recommend increasing community awareness of the program. Identified barriers to participation included transportation difficulties and cost. Conclusions The PD-specific exercise program was perceived as beneficial to overall health and wellness, providing physical, emotional, and social benefits. A lack of awareness about the significance of exercise in PD remains a critical challenge, highlighting the need for clinicians to take a more active role in educating patients about the benefits of exercise, an area that appears underemphasized.