Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson's Disease and Their Care Partners Receiving Accessible Research Education

Maria E Ramos; Suraj Pothineni; Liang Ni; Allison A Bay; Todd Prusin; Madeleine E Hackney

doi:10.1155/2023/5519646

Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson's Disease and Their Care Partners Receiving Accessible Research Education

Parkinsons Dis. 2023 Sep 11:2023:5519646. doi: 10.1155/2023/5519646. eCollection 2023.

Authors

Maria E Ramos¹, Suraj Pothineni², Liang Ni², Allison A Bay², Todd Prusin², Madeleine E Hackney^{2

3

4

5

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Affiliations

¹ Emory University College of Arts and Sciences, Atlanta, Georgia.
² Emory University School of Medicine, Department of Medicine, Division of Geriatrics and Gerontology, Atlanta, Georgia.
³ Atlanta VA Center for Visual and Neurocognitive Rehabilitation, Atlanta, Georgia.
⁴ Emory University School of Medicine, Department of Rehabilitation Medicine, Atlanta, Georgia.
⁵ Emory University School of Nursing, Atlanta, Georgia.
⁶ Birmingham/Atlanta VA Geriatric Research Education and Clinical Center, Atlanta, Georgia.

Abstract

Background: People with Parkinson's disease (PWP) and their care partners (CP) are underrepresented in research.

Methods: As an eight-week research advocacy training program, TeleDREAMS was designed to increase understanding of, and participation in, clinical research by older adults through topics on the research process. Qualitative analysis was conducted to explore themes from 365 thirty-minute semistructured phone interviews with 32 PWP and 17 CP TeleDREAMS participants. Interviews gauged progress, motivation, and information retention after each weekly module.

Results: Eight salient themes were identified from the interviews, including Understanding the Importance of Advocacy and Becoming Cognizant of Past Advocacy Experiences.

Conclusions: While some findings aligned with weekly module topics, others, such as stated learning preferences and knowledge acquisition of older adults in an educational program, were unexpected. TeleDREAMS may increase interest in community engagement, research participation, and advocacy roles in marginalized and underrepresented participants.