Considering health care needs in a rural parkinson disease community

Reshmi L. Singh, Erin J. Bush, Hidecker Mary Jo Cooley, Catherine Phillips Carrico, Sandra Sundin

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

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.

Original languageEnglish
Pages (from-to)15-28
Number of pages14
JournalProgress in Community Health Partnerships: Research, Education, and Action
Volume14
Issue number1
DOIs
StatePublished - Mar 1 2020

Bibliographical note

Funding Information:
stakeholders to participate in the study herein, by sending out a call for participation through the WPP newsletter, and then by word of mouth and snowball recruiting. The call for participation invited PD stakeholders to attend a free luncheon meeting (funded by the Patient Centered Outcomes Research Institute grant), to inform Parkinson’s stakeholders about the WPP’s purpose and goals. After the luncheon, all stakeholders were invited to stay for focus groups so that they may give input about needs and resources for PwP in Wyoming. The luncheon was held in a centrally located town in the state, and participants (who were from different parts of the state) were informed, before the luncheon, that they could attend via video conferencing if they preferred or if they were unable to attend in person.

Publisher Copyright:
© 2020 Johns Hopkins University Press.

Keywords

  • Allied Health Occupations
  • Community-Based Participatory Research
  • Parkinson’s Disease
  • Qualitative Analysis
  • Rural Health Services
  • Rural Population

ASJC Scopus subject areas

  • Health(social science)
  • Education
  • Sociology and Political Science

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