Navigating Parkinson’s in Rural America Can Be a Challenge, Research Says
People with Parkinson’s disease (PD) who live in rural areas of the United States face unique challenges, such as limited access to experts, according to a study that also suggests that technology could help overcome these obstacles.
Because the disease is chronic and degenerative, people with Parkinson’s require ongoing healthcare over time. Limited access to quality care — whether from financial, geographic, or other constraints — can exacerbate problems these patients face. Because specialists tend not to practice in rural areas, those with Parkinson’s who live in these areas may have more difficulty getting quality care than their counterparts living in more urban settings.
However, the specific healthcare challenges faced by Parkinson’s patients in rural areas of the United States have not been addressed in scientific research.
“The specific research objective of this study was to have PD community stakeholders identify health care barriers and resources as well as possibilities for improved health care in a rural state,” the researchers wrote.
The team conducted a series of focus groups consisting of people in the Parkinson’s community living in Wyoming, which the researchers described as, “a rural, frontier state with low population and great distances between towns.”
“As far as we know, this was the first, in-depth community engagement effort in the United States for understanding care for patients with PD living rurally,” they wrote.
A total of five focus groups were conducted, with 30 total participants (50% females, 83% college-educated, and 37% over 65 years old). The groups comprised a roughly even mix of Parkinson’s patients, their caretakers, and public health professionals (pharmacists, physical therapists, social workers, etc.). No physicians, neurologists, or governmental employees participated, and the researchers noted that addressing these perspectives may be an area for future investigation.
Moderators asked the focus groups open-ended questions about difficulties faced, and the resulting discussions were recorded. The researchers then analyzed these discussions, and they identified three broad themes that emerged.
The first of these themes, termed “PD issues,” included “concerns related to the disease process and its treatment.” For example, many participants felt inadequately informed about their medications, and reported that it was difficult to get expert help.
“It would be good to have a [pharmacist available] … Maybe a special pharmacist because the balance and the dosage is just really mind boggling,” one participant said.
The PD issues theme also included concerns about environmental factors (e.g., working in a refinery or being exposed to radiation) that might increase the risk of Parkinson’s for people in rural areas. Limited ability to exercise was also noted in this theme.
The second theme was “access-related issues,” which encompassed difficulty accessing information, specialist care, and community support. A common thread in this theme was how the need to travel long distances limited access to care.
“Just the distances [are] hard. I mean, it takes a lot of energy for all of us … if you don’t live close [to providers]. It takes all day to do physical therapy, or you know, just life. It’s exhausting. And Wyoming makes it harder,” a participant said.
Financial barriers, such as lack of health insurance, were also discussed. And some participants reported being uncertain how they could get information about Parkinson’s: “As a [person with Parkinson’s], I have had really hard time finding information about what’s happening and what I can do about that,” one said.
The third theme was “stigma.” Commonly, this manifested as people not wanting to admit that their condition might require medical attention. “They just don’t want to go to the doctors. They’re in denial,” a participant said about people with undiagnosed Parkinson’s.
In terms of strategies to mitigate these problems, technological solutions emerged as a consistent possibility. For instance, communicating with healthcare workers virtually could allow better access to experts, online resources can provide useful information, and online groups and classes can lend support or facilitate activities like exercise.
“Themes revealed through the current study indicate that rural residents diagnosed with or caring for a [person with Parkinson’s] experience confusion, uncertainty, and isolation,” the researchers concluded. “The use of technology to facilitate communication with health care professionals, access to therapy and exercise programs, learning about the disease, and participation in support and networking groups were all solutions suggested by participants to overcome the barriers inherent to living in a rural location.”