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Abstract

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.

Keywords

Community-Based Participatory Research, Support Groups, Parkinson's Disease, Focus Groups, Qualitative Research, Interpretive Phenomenology

Author Bio(s)

Erin J. Bush, Ph.D., is an assistant professor in the Communication Disorders Division at the University of Wyoming, whose research focuses on the awareness, treatment, and increase of life participation for individuals with acquired neurogenic communication disorders. Her involvement in implementing telepractice service delivery as well as her past and current research interests regarding telepractice, was spurred by her broad interest in rural healthcare. She is particularly interested in qualitative and mixed methodology, and has utilized quantitative, qualitative, and mixed methods approaches in her published research. Correspondence regarding this article can be addressed directly to: ebush1@uwyo.edu.

Reshmi Singh has a PhD in Social and Administrative Pharmacy and her research focus is on improving patient-centered care and medication use with the intention to improve patient health outcomes. This goal is achieved by examining patient perspectives, patient engagement, health literacy, and medication experiences. In addition, her research examines how to improve patient quality of life in vulnerable populations such as patients with Parkinson’s disease, intellectual disabilities, and/or those with mental health issues. Her training in research methods involves both qualitative and quantitative research, and more recently engaged scholarship. Correspondence regarding this article can also be addressed directly to: rsingh5@uwyo.edu.

Mary Jo Cooley Hidecker, PhD, is an assistant professor in Communication Disorders at the University of Wyoming. As a speech-language pathologist and audiologist, her research interests include patient-identified issues in health care delivery. Correspondence regarding this article can also be addressed directly to: MaryJo.CooleyHidecker@uwyo.edu.

Catherine Phillips Carrico, PhD is a Clinical Assistant Professor in the College of Health Science at the University of Wyoming and the Associate Director of the Wyoming Center on Aging. She is a licensed psychologist with research experience in qualitative inquiry and program evaluation. Correspondence regarding this article can also be addressed directly to: ccarrico@uwyo.edu.

Acknowledgements

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.

Publication Date

6-10-2018

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

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