Research with Severely Mentally Ill Latinas: Successful Recruitment and Retention Strategies

Abstract

Individuals from minority groups in the United States have been found less likely than non-Hispanic whites to participate in research studies. The recruitment and retention of individuals from minority groups has also proved challenging. We describe the challenges that we encountered in recruiting and retaining a sample of severely mentally ill Mexican and Puerto Rican ethnicity for a study of the context of HIV risk. We recruited women in San Diego County, California and northeastern Ohio who were between the ages of 18 and 50 and who had diagnoses of schizophrenia, bipolar disorder, or major depression. We identified challenges to recruitment and retention at the macro, mediator, and micro levels. We were able to retain 81.1% of the Puerto Rican cohort and 26.7% of the Mexican cohort over a 5-year period. The vast majority of barriers to recruitment and retention within the Puerto Rican cohort occurred at the micro (individual) level. Macro level barriers occurred more frequently and impacted retention to a greater extent within the cohort of Mexican women. Our experience underscores the importance of outreach to the community and the interaction between staff and individual participants. Diverse strategies are required to address the impact of migration on follow-up, which may vary across groups.

Culturally-Modified Recruitment Strategies for Latino Families in Clinical Child Research: A Critical First Step

“…The publication outlined five recommended elements of outreach: understanding the study population, establishing an explicit outreach plan, achieving agreement on research plans, designing and conducting evaluations, and establishing and maintaining communication. The first element of outreach seems particularly crucial to examine when working with Latino families, given that the population is so culturally diverse (National Institutes of Health (NIH 2002;US Census Bureau 2003a) and faces a number of practical and cultural barriers that likely prevent participation in clinical child research (Gilliss et al 2001;Le et al 2008;Loue and Sajatovic 2008;Preloran et al 2001;Rodriguez and Rodriguez 2006;Yancey et al 2006).…”

“…The little available research in this area, which will be discussed below, has largely been exploratory and qualitative in nature and has resulted in general recommendations related to combating practical and cultural barriers to Latino participation in clinical research (e.g., Gilliss et al 2001;Le et al 2008;Loue and Sajatovic 2008;Preloran et al 2001;Rodriguez and Rodriguez 2006;Yancey et al 2006), but has not provided empirical evidence supporting the effectiveness of the recommended modifications (Yancey et al 2006). Researchers must now begin to quantitatively examine these modifications, as well as individual and cultural factors that may shed light on which modifications are most effective for whom.…”

Understanding Barriers to Retention after a Clinical Treatment Trial Drop Out: Translating Qualitative Research and Theory to Practice

“…Andersen and Newman's [16] framework helps illuminate new and important Predisposing "Psychological Coping" Belief barriers specific to this co-morbid population, that are not specifically indicated in the literature (i.e., "feeling better;" "not interested;" "emotional stress;" grief over "loss;" untreated panic attacks; and anxiety over fertility issues). However, there are also other possible relevant cultural barriers (i.e., distrust, fear, and language issues [26,31,32]) and provider barriers (i.e., inflexibility on the researchers' part to reschedule, lack of feedback from the research team [26]) indicated in the literature which were not captured in this study's medical record documentation. Such cultural and provider barriers are more sensitive issues that are less commonly explored and documented.…”

“…This study identifies many of the same barriers found in the literature that categorize Latino clinical trial retention barriers: familial relationships and issues [22], lack of transportation, employment interferences [23], economic stress [24] and financial costs [25], insufficient caregiving resources to meet demands [26], practical barriers [24,27], like interference with other top priorities of life such as work and family obligations [26], and systems barriers [28][29][30]. Andersen and Newman's [16] framework helps illuminate new and important Predisposing "Psychological Coping" Belief barriers specific to this co-morbid population, that are not specifically indicated in the literature (i.e., "feeling better;" "not interested;" "emotional stress;" grief over "loss;" untreated panic attacks; and anxiety over fertility issues).…”

“…This may reflect an element of just "pleasing" the provider (which may be influenced by cultural factors), or perhaps the interference of life priorities and demands got in the way of follow-through [26]. This might also be a matter of skepticism and reluctance over medical research or clinical trial research.…”