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Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities
People with Parkinson’s disease who live in rural communities may lack information and support regarding their condition, compared to those in urban or suburban areas. For the study described herein, the researchers sought to gain a deeper understanding of support group experiences of rural Parkinson’s disease stakeholders through merging an interpretive phenomenological design with Community-based Participatory Research (CBPR). Using this merged approach, we collected qualitative data from five focus groups to gain a community perspective. The qualitative data was analyzed thematically, first, and then further explored for an overall essence. The theme, Support Group Benefits: Opportunities for Communication expounded upon the importance of support groups to Parkinson’s disease stakeholders. Barriers to Support Group Participation represented how the disease and the rural living conditions inhibited support group participation. Strategies to Improve Support Group Access demonstrated the different ways that the stakeholders had tried to overcome barriers and strengthen support groups. Notably, some participants discussed ways that support groups could increase their accessibility to more individuals with Parkinson’s living rurally so that they endured as a future resource. The themes and accessibility recommendations that emerged led the researchers to interpret the overall essence of this work as, experiencing support group benefits despite barriers, leaving a legacy.
Community-Based Participatory Research, Support Groups, Parkinson's Disease, Focus Groups, Qualitative Research, Interpretive Phenomenology
We thank the Parkinson’s stakeholders who shared their perspectives and experiences with us. Focus group moderators or co-moderators (in addition to the authors who served as moderators) were Rex Gantenbein, Christopher Herron, Beth Young Jones, Judith Powers, and Sandra Sundin. Transcriptionists included Katelynne Adams, Clarissa Petres, Brittney Arevalo, Allison Long, Bree Olson, Adele Riley, and Noel Schatz. We also thank the coordinators of the Wyoming Parkinson’s Project, Sandra Sundin and Christopher Herron. The luncheon, travel, and accommodations for participants were paid for through a Patient Centered Outcomes Research Initiative (PCORI) Pipeline to Proposals: Tier III Grant. This PCORI award also paid student research assistants for their time transcribing.
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Recommended APA Citation
Bush, E. J., Singh, R. L., Hidecker, M. C., & Carrico, C. P. (2018). Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities. The Qualitative Report, 23(6), 1381-1400. https://doi.org/10.46743/2160-3715/2018.3312
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