Recruitment of Minorities with Serious Mental Illness for Community-Engaged Research: Barriers, Strategies, and Rewards

The United States is expected to become more diverse. The Census Bureau projected that the country will become a “majority-minority” nation with a “plurality” of racial and ethnic groups by 2044. The implications of these projections for social work researchers include the need to increase representation of racial and ethnic minorities in clinical research to not only yield pertinent data on race- and ethnicity-related risk and protective factors, but also enable the investigation of any disparities in need, health service use, or outcomes.

Increasing the participation of minorities diagnosed with serious mental illness (SMI) in clinical research is especially critical given the considerable illness burden that is found with these disorders and the underrepresentation of this subpopulation in the literature. Underrepresentation may be attributed to several factors that include the linguistic diversity among certain minority subpopulations that act as a deterrent to researchers, difficulties in reaching minorities with SMI who are traditionally “hidden away” in their communities, clients’ illness severity that may prevent them from engaging in research, clients hesitation to participate because of assumptions around citizenship status eligibility, challenges in accessing and navigating healthcare systems from which they would traditionally be informed about clinical research, individual and cultural stigma of participating in clinical research, and minorities’ general mistrust of research that discourage their participation. Collectively, these barriers have resulted in a dearth of reliable empirical data from this socially disadvantaged subgroup that accurately capture their needs. Perpetuating this gap in knowledge violates the key ethical principle of justicefor conducting research with human subjects, which requires that the benefits and burden of research to be equally distributed across individuals and groups.

This roundtable discussion will focus on the recruitment of Latinos and Asians who are seeking treatment in urban community-based mental health settings for psychoses. Importantly, Latinos and Asians are not only the largest racial and ethnic subgroups in the United States, but they also experience vast disparities in mental health care. We will begin by exploring the concerns of minorities with SMI about research participation through the perspective of a mental health provider who has extensive experience working alongside individuals and their family members whose lives have been affected by SMI. Learning about the barriers to research participation encountered by minorities with SMI may aid researchers in tailoring recruitment methods. Second, we will describe the barriers encountered and methods used to recruit Latinos with first-episode psychosis and their family members as part of a NIMH-funded study focused on reducing duration of untreated psychosis among Latinos. Third, we will discuss the challenges of recruiting Asian Americans treated for schizophrenia and share the use of strategies to recruit this minority subpopulation for the investigation of their treatment responsiveness. We will end by sharing the benefits of investing in relationship building with research participants as evidenced by high rate of participation in a subsequent qualitative study among Latinos with schizophrenia who were previously engaged in a NIMH-funded family-psychoeducation intervention study.