The recruitment and retention of minority populations in research studies have proved to be difficult tasks that have impeded the participation of African Americans, Latinos, Asians, American Indians, and others from taking part in research.
This is an issue that alters the ability for study findings to be generalized among all populations, thus leaving limitations within these studies. Much research has been done to investigate factors associated with failing minority recruitment, and how participation by minorities can be improved. First, it is important to identify the factors associated with failing minority recruitment.
The perception of many research teams is that minority groups have lower interest in clinical trials due to a history of racism and historical references such as the Tuskegee Syphilis Study in the United States. While in some cases this is true, this perception has in turn caused clinical researchers to limit their recruitment goals for minority populations.
To assist in changing this, in the National Institute of Health enacted the NIH Revitalization Act which mandates minority inclusion in clinical studies. Although this is an important step in setting minority recruitment goals, a limitation is that the NIH guidelines are quite broad and leave space for interpretation.
Therefore, clinical researchers are to set specific goals for their study depending on what the study is investigating and the specific populations within their local demographic. Hudson and colleagues suggested that the length of the scales, as well as the redundancies of the measures, be taken into consideration when putting together study instruments.
Sinclair and colleagues also discussed the importance of language in recruitment success. Written project materials needed to be clear and easy to read and sensitive to educational background. Effective wording of questions and piloting questions through open-ended interviews or in focus groups was helpful. Sinclair and colleagues also promoted offering potential participants the option of a verbal, rather than written, administration of the interview. Ethics require that the research design be communicated in a clear manner.
Sinclair and colleagues noted that recruitment may actually be assisted by this clarity. Focus groups with African American elders suggested that subjects' discomfort with the research process seemed to come from a lack of knowledge concerning the purpose of the research design.
They suggested that if the research design were properly communicated, potential study participants would be more willing to enroll in the research study.
Though ethnic matching of project staff with the potential study participants has been discussed, another possible enabler for recruitment and retention in research is to seek ethnic matching between the principal investigator of the project to the studied population Sinclair et al. Focus groups revealed that this was potentially of greater importance than mere ethnic matching of subjects to project staff.
When the senior person responsible for the research was of the same ethnicity, potential subjects were likely to be more at ease. Hazuda and colleagues rated the importance of a number of very specific enablers at the individual level that they found to be related to the recruitment of Spanish American elders. They discussed enabling factors and barriers oriented toward the family members of participants as well as those directed toward the individual participant.
In terms of family members of the participants, they found it was very important to build rapport and interact with family members as joint decision makers, to accommodate Spanish-speaking family members, to adapt their approach to married female participants to meet their husbands' preferences that is, secure husband's approval for wife's participation and use female interviewers , and to accommodate caretaking responsibilities for grandchildren.
In terms of individual participation, they found it essential to demonstrate familiarity with the community and sensitivity to the participant's cultural background, to modify their research approach to match the worldview and life context of diverse population subgroups, to accommodate Spanish speakers, and to provide continued encouragement at follow-up visits.
Though not essential, they found the following to be very important to assuring recruitment success and retention: emphasizing the importance of the study and reinforcing the elder's sense of altruism; emphasizing confidentiality, especially for such sensitive topics like mental health; conducting follow-up interviews at home or by telephone; sending thank-you notes and reminders; and providing monetary incentives for completed assessments.
Although to a large extent factors were rated similarly across research settings e. European American , Hazuda and colleagues noted several differences. The greatest difference between settings occurred at the mediator level and reflected the key role of collaborating physicians and their staff as gate-keepers of the clinic population.
The key difference between Mexican American and European American groups occurred at the micro level and reflected cultural differences in language used for some Mexican Americans, it was necessary to conduct all interviews in Spanish and the role of family members in the decision to participate with some Mexican American women having to secure their husband's approval for study participation.
Although Hazuda and colleagues found that an ethnic match between the interviewer and participant was not important, they had inconsistent findings about gender matching. Gender matching increased response rates among both Mexican American and European American women in a surgery study and among Mexican American women alone in a depression study.
Hudson and colleagues also looked at the influence of gender on recruitment and retention separately for their studies in the community and clinic settings. They found that in the community setting slightly more men than women were recruited by personal contact, independent of churches or other organizations In contrast, retention rates in the clinic sample were higher for women than men We believe that important lessons about ethnic minority subject recruitment and retention emerged from our experience with the MAHP program.
We learned that the culture of the participants, and the communities they represented, needed to be explicitly incorporated into models of recruitment. All Centers stressed the importance of understanding local histories between academic institutions and the community as well as of the local social histories of organizations and the ethnic groups being studied.
Community prejudices against an academic institution, although familiar to many of us, have not been commonly included in discussions of recruitment and retention. Furthermore, all Centers discussed how it was essential to incorporate key community people into the research team and to either establish or use an existing community advisory group to aid in recruitment and retention of participants, as well as to help ensure the cultural competence of other aspects of the research e.
Most Centers discussed the importance of using qualitative research methods, which helped to create an environment in which participants, family members, and agency administrators felt comfortable sharing information.
Lastly, almost every MAHP investigator confirmed the importance of tempering research objectives with making authentic connections with the participants in their research. Instead, investigators have to be present in the community of interest and be perceived as a positive force by community gate-keepers and elders themselves. We developed the matching model of recruitment in hopes that it might serve to enhance recruitment and retention efforts as well as further our theoretical understanding of recruitment and research participation.
We plan to continue to build on this model and add additional levels e. Formal evaluation studies are needed to compare the yield as well as the cost-effectiveness of the different approaches discussed. Decision Editor: Laurence G. Branch, PhD. Ory, P. Lipman, R. Barr, J. Stahl, , Journal of Mental Health and Aging, 6 1 , 9— Copyright by Springer Publishing Company, Inc. Adapted with permission.
Levkoff, B. Levy, and P. Weitzman, , Journal of Mental Health and Aging, 6 1 , 29— Guo Z. The power of labels: Recruiting dementia-affected Chinese American elders and their caregivers.
Hazuda H. Health promotion research with Mexican American elders: Matching approaches to settings at the mediator- and micro-levels of recruitment. Hudson S. Predicting retention for older African Americans in a community study and a clinical study: Does anything work? Levkoff S. The matching model of recruitment. McAdoo J. Crime stress, self-esteem, and life satisfaction.
Jackson, L. Taylor Eds. Newbury Park, CA: Sage. McNeilly M. Minority populations and psychophysiologic research: Challenges in trust building and recruitment.
Morgan D. When to use focus groups and why. Morgan Ed. Ory M. A national program to enhance research on minority aging and health promotion. Prohaska T. Recruitment of older African Americans into church-based exercise programs.
Sinclair S. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account. Sign In. Advanced Search. Search Menu. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents Abstract. Oxford Academic. Google Scholar.
Herman Sanchez. Select Format Select format. Permissions Icon Permissions. Minority , Recruitment , Retention , Elderly , Research. Table 1. Overview of Exploratory Centers. Principle Investigator. Research Projects. Leventhal Health status project: Medical history and other indicators of psychological well-being and physical health Ethnographic study of thoughts and actions regarding health practices, vulnerability to illness, and health care experiences Hypertension project: A descriptive study of commonsense views of causes and treatment of high blood pressure Effects of nutritional supplement vs.
Williams Epidemiological relationships among race, hypertension, and psychological factors Laboratory study of the association of stress and sympathetic nervous system activity, high blood pressure, and sodium retention Exercise training to reduce blood pressure among hypertensive older African Americans Community outreach and health education: Effectiveness of a church-based educational program in increasing knowledge of good health habits.
Open in new tab. Table 2. Overview of the Matching Model of Recruitment. She also recognizes the need for mechanisms, including indicators, which allow deteriorating situations to be identified as early as possible in order to avoid grievances developing into violence, conflict or even genocide. According to the United Nations High Commissioner for Refugees, close to 15 million people in more than 49 countries are stateless, and numbers appear to be increasing. Many minorities live in a precarious legal situation because, even though they may be entitled under law to citizenship in the State in which they live, they are often denied or deprived of that right and may in fact exist in a situation of statelessness.
While many conditions give rise to the creation of statelessness, including protracted refugee situations and State succession, most stateless persons today are members of minority groups. The report of the Independent Expert provides a consideration of the global situation and elaborates a series of recommendations. Introduction and overview of the mandate. Concept of minority: mandate definition. International standards. Communication Search. Country visits. Consultations and Regional Activities.
Regional Forums on Minority Issues.
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