Considering Health Care Needs in a Rural Parkinson Disease Community

Background: People living with Parkinson disease (PD) have multiple health care needs that intensify over time, because the disease is both chronic and degenerative. Past research indicates that issues with mobility, financial constraints, and lack of support networks impede access to health care for people with PD. These challenges are elevated for individuals who live in rural communities due to the lack of local health care professionals and specialists and support resources, and the need to travel to see providers/specialists. The research objective was to have PD community stakeholders identify health care barriers and resources as well as possibilities for improved health care in a rural state.

Methods: Focus groups were conducted in the context of a community-based participatory research (CBPR) approach. Focus group data collection helped create comfort and parity in the discussion, while a CBPR approach allows for authenticity of the findings because members of the community in question are involved as researchers. The responses were recorded and transcribed verbatim. Coding and organizing of themes was completed manually and using NVIVO 10 software.

Results: Qualitative analysis revealed three main themes, PD issues, access issues, and stigma. These themes described disease-related stigma and concerns about disease progression and treatment, as well as challenges in accessing information, providers, and support by the PD stakeholders. The study results provided insight into the needs of people living with PD in rural communities.

Conclusions: Rural PD stakeholders proposed the use of technology (e.g., telehealth) to provide support to improve health care for people with PD.