An ethno-medical perspective on research participation: a qualitative pilot study

Abstract

Background: Recruitment of racial/ethnic minorities for clinical research continues to be problematic, yet critical to ensuring that research data will be applicable to diverse populations. There is a paucity of information about culturally appropriate methods for recruiting and retaining racial/ethnic minorities in research.

Objective: To cross-culturally assess perceptions of research participation by African American and immigrant Latinos living in the inner-city community of Watts, Los Angeles, California, using qualitative methods.

Design: Focus groups using ethnically matched moderators were convened with African American and immigrant Latino participants. Discussion was facilitated using a script that focused on perceived "feelings" and "perceptions" about research. Discussions were audiotaped, transcribed, and analyzed using manual and computerized statistically based software (mixed) methods.

Results: African Americans and immigrant Latinos shared several barriers and motivators to research. However, they also reported barriers and motivators to research that were distinct to each group. Latinos were more interested in healthcare and health information, and African Americans were more concerned with issues of trust and quality of care. Most participants said they would participate in research if they were better informed, or if they or a family member had an illness. Improving communication was reported as being important for motivating participation in clinical research. Overall, socioecologically and socioeconomically based domains were shared, whereas historically and/or socioculturally based domains were distinct.

Conclusions: Using an ethno-medical science model, we demonstrated that it is possible to identify shared barriers and motivators to research participation between 2 distinct cultural groups. This approach can be useful in developing targeted community-based strategies to increase minority participation in clinical trials.

Figure 1

Ethno-medical model of research participation.