A Formative Qualitative Evaluation to Inform Implementation of a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors: The DREAMS Program

Abstract

This article reports on a formative qualitative evaluation conducted to identify potential barriers and facilitators prior to implementation of a two-part educational intervention designed to increase older adults' participation in clinical research. We conducted focus groups with 35 older adults from diverse racial, ethnic, and socioeconomic backgrounds (Mean age = 74.5 ± 7.4 years), and six clinical researchers involved in aging research. Two older adult patient stakeholder advisors participated as members of the research team. Findings from thematic analysis showed that common barriers to research participation included older adults' fear and mistrust of researchers and the medical community as well as misperceptions and negative attitudes about clinical research. A commonly held belief was that most clinical research is conducted by "greedy" pharmaceutical companies who are more interested in profits than finding cures for disease. Results provide useful insights regarding enrolling members of hard-to-reach older adult populations in clinical research.

The Relationship Between Attitudes about Research and Health Literacy among African American and White (Non-Hispanic) Community Dwelling Older Adults

“…REALM associates the numerical raw score of correctly pronounced words to the patients' reading levels: third grade and below (0-18), fourth to sixth grade , seventh to eighth grade (45-60), and high school (61-66). S-TOFHLA is a seven-minute reading comprehension test to assess comprehension of health-related material and is divided into inadequate (0-16), adequate (17)(18)(19)(20)(21)(22), and functional (23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36) categories [32].…”

“…Minority communities have shown reluctance to participate in potentially beneficial research for many reasons, often well founded in unfortunate historical events (e.g., Tuskegee syphilis trials). Barriers to participation in research, noted from focus groups conducted by Perkins et al [21] with diverse older adults, include perceived ageism and disrespect from health professionals and distrust of researchers and the medical community. Additional community barriers include time constraints [22], the perception that there is no real-time benefit to participants, lack of awareness of research assessments tested [23], and inadequate knowledge concerning the need for medical research [24].…”

Using a Warm Hand-Off Approach to Enroll African American Caregivers in a Multi-Site Clinical Trial: The Handshake Protocol

“…Despite concerted efforts, racial and ethnic minority populations are continuously underrepresented in clinical research (Castillo-Mancilla et al, 2014;Spiker & Weinberg, 2009;Torres et al, 2015). Multiple barriers in the enrollment of underrepresented racial and ethnic individuals have been identified, including mistrust and skepticism of health systems, lack of awareness of clinical trials, poor access, language discordance, and ineffective communication (Disbrow et al, 2020;Erves et al, 2017;Perkins et al, 2019). Inadequate recruitment and enrollment of minority participants contributes fundamentally to the lack of representation of these groups in research which, in turn, limits the generalizability and applicability of clinical research and results validity and further exacerbates disparities (Erves et al, 2017).…”

Effects of a Health Education and Research Participation Enhancement Program on Participation and Autonomy in Diverse Older Adults

“…Furthermore, it is not known what impact participating in a highly interactive health education program may have on participation/autonomy among this same group. Previous studies (Hart et al, 2017;Perkins et al, 2019) show that training designed to increase understanding of the research process is effective in increasing research participation. This study examined the impact of participation in the DREAMS program (Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors) on social participation by community-dwelling older adults.…”