Latine/Hispanic people with Parkinson’s disease (PD) face faster disease progression, less access to clinical care and fewer opportunities to participate in community-based exercise programs, despite strong evidence that physical activity improves symptoms and quality of life. This project conducted interviews with Latine/Hispanic people with PD, their care partners, community partners and clinical partners across the U.S. to identify barriers and facilitators to adopting and sustaining physical activity programs. These findings will inform future work developing virtual dance programs for Latine/Hispanic people with PD and their care partners.
The Challenge
The Latine/Hispanic community has a higher incidence rate of Parkinson’s disease, with faster disease progression and less well-managed symptoms than White non-Latine/Hispanic people. Community-based exercise programs can help increase physical activity, manage symptoms and enhance quality of life for people with PD. This may be especially relevant for Latine/Hispanic people with PD since they are less likely than White people with PD to be referred to clinical services and are more likely to be uninsured.
Project Goals
The purpose of this study was to describe the institutional, community-based and individual factors that impact how Latine/Hispanic people with PD and their care partners engage with physical activity programming, with the long-term goal of developing physical activity interventions that improve the health of these groups.
Results
The research team conducted interviews with exercise instructors, healthcare professionals and Latine/Hispanic people with PD and their care partners, providing valuable insight into their experiences with community exercise programming. People with PD expressed a high level of engagement with PD-specific organizations, especially if programs are available in their local community. Care partners rarely accessed community-based exercise programs but expressed the desire to learn more about such opportunities. Exercise instructors spoke about challenges with reaching the overall Latine/Hispanic US population of people with PD, citing limited virtual offerings, few programs available in Spanish, and lack of classes that include care partners. Healthcare professionals had no reservations in recommending physical activity to their Latine/Hispanic patients with PD and spoke about how care partners were generally open to the possibility of participating in community-based exercise programs yet did not know of any programs in their local community that were tailored for this population.
Looking to the Future
The data collected through this project served as preliminary data for a grant submission to the National Institute of Aging. The postdoctoral trainee formed valuable partnerships with organizations such as the Davis Phinney Foundation, Parkinson Movement Disorder Alliance and American Parkinson Disease Association. These groups, as well as Latine/Hispanic people with PD and their care partners, will build the community advisory groups to further advance this research. Future work will focus on designing and testing virtual dance programs to improve the health of people with Parkinson’s disease and their care partners.
