Interpretive Qualitative Evaluation Informs Research Participation and Advocacy Training Program for Seniors: A Pilot Study

Author:

Bay Allison A.1,Tian Tina1ORCID,Hackney Madeleine E.12345ORCID,Silverstein Hayley A.1,Hart Ariel R.1ORCID,Lazris David1,Perkins Molly M.1345

Affiliation:

1. Department of Medicine, Emory University School of Medicine, 100 Woodruff Circle, Atlanta, GA 30322, USA

2. Center for Visual and Neurocognitive Rehabilitation, Atlanta Veterans Affairs Healthcare System, 1670 Clairmont Rd., Decatur, GA 30033, USA

3. Birmingham/Atlanta VA Geriatric Research, Education, and Clinical Center (GRECC), Decatur VA Research Building, 3101 Clairmont Rd., Mail Stop Code 11-B, Brookhaven, GA 30329, USA

4. Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Rd., Atlanta, GA 30322, USA

5. Department of Rehabilitation Medicine, Emory University School of Medicine, 1441 Clifton Rd., Atlanta, GA 30322, USA

Abstract

Background: An 8-week educational intervention co-taught by medical students and faculty was designed to foster communication between clinical researchers and populations of interest to ultimately increase participation in clinical research by older adults, including underrepresented groups. Weekly topics focused on age-related changes and health conditions, socio-contextual factors impacting aging populations, and wellness strategies. Objectives: To evaluate the successes and weaknesses of an educational intervention aimed at increasing the participation of older adults in clinical research. Design: A focus group was assembled after an 8-week educational intervention, titled DREAMS, to obtain participants’ feedback on the program, following a pre-formulated interview guide. Settings: Participants were interviewed in a health center office environment in the United States of America in April of 2016. Participants: A post-intervention focus group was conducted with a group of eight older adults (mean age = 75.8 ± 11.4 years) from 51 total participants who completed the intervention. Methods: The focus group was interviewed loosely following a pre-formed question guide. Participants were encouraged to give honest feedback. The conversation was recorded, transcribed verbatim, and analyzed using thematic analyses. Results: While participants viewed most aspects of the study as a success and stated that it was a productive learning experience, most participants had suggestions for improvements in the program content and implementation. Specifically, the composition of and direction to small breakout groups should be carefully considered and planned in this population, and attention should be paid to the delivery of sensitive topic such as death and dementia. A clear main benefit of this programmatic approach is the development of a rapport amongst participants and between participants and clinical researchers. Conclusions: The results provide useful insights regarding improving participation among hard-to-reach and historically underrepresented groups of older adults in clinical research. Future iterations of this program and similar educational interventions can use these findings to better achieve the programmatic objectives.

Funder

Patient Centered Outcomes Research Institute

National Parkinson Foundation

Publisher

MDPI AG

Subject

Health Information Management,Health Informatics,Health Policy,Leadership and Management

Reference54 articles.

1. Hackney, M.E., Perkins, M., Dillard, R., and Hart, A. (2023, April 15). DREAMS Toolkit. Available online: https://www.pcori.org/engagement/engagement-resources/Engagement-Tool-Resource-Repository/dreams-toolkit.

2. A Case Study of Engaging Hard-to-Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)(R);Kaiser;Res. Nurs. Health,2017

3. Achieving Health Equity: Closing The Gaps In Health Care Disparities, Interventions, And Research;Purnell;Health Aff.,2016

4. Age-Related Diseases and Clinical and Public Health Implications for the 85 Years Old and Over Population;Jaul;Front. Public. Health,2017

5. Enrollment of elderly patients in clinical trials for cancer drug registration: A 7-year experience by the US Food and Drug Administration;Talarico;J. Clin. Oncol.,2004

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