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Abstract Purpose: This article presents a summary of an earlier monograph on the recruitment and retention of older ethnic minority individuals. Design and Methods: The authors provide an overview of recruitment and retention efforts made by six National Institutes of Health Office of Minority Research/National Institute on Aging-funded Centers on Minority Aging and Health Promotion. We rely on a model that focuses on barriers and enablers to recruitment that stem from the minority community as well as the research community. Results: The summary of findings suggests that recruitment and retention success occurs when there is a match between the goals of the ethnic minority communities and the research community. Implications: Recognizing and understanding the culture of each ethnic minority community as well the research perspectives is essential to successful recruitment and retention of ethnic minority elderly individuals. , Essential to research in any field is the recruitment and retention of study participants.
If recruitment lags, it is unlikely that results will be generalizable to the studied population; if retention lags, questions arise about the validity of conclusions drawn by study investigators. Thus, recruitment and retention pose specific threats to any studies involving minority elders. This article summarizes lessons learned about recruitment and retention of older ethnic minority individuals from a multisite national program to enhance research on minority aging and health promotion. The Exploratory Centers for Minority Aging and Health Promotion (MAHP) were funded by the National Institute on Aging (NIA) and the Office of Research on Minority Health (National Institutes of Health, NIH) from 1993 through 1997.
These studies were designed to conduct research and related activities aimed at improving the health status of older ethnic minority populations. The purpose of these Exploratory Centers was threefold: (a) to create an interdisciplinary coordinated program to stimulate research related to diseases, conditions, and other factors that lead to ill health and disability in older minority populations; (b) to support research on health behaviors and their relationship to health status; and (c) to develop and test interventions to improve health and functioning and programs of health education and outreach. The Centers provided an environment in which experienced and junior investigators, and nonminority and minority investigators, interacted and directed research efforts focused on health and aging of ethnic minority populations. Each Exploratory Center included pilot research projects, small-scale intervention studies, and an administrative core that typically implemented a centralized recruitment and retention strategy. Presents an overview of the individual centers, their research projects, and the ethnic minority populations studied.
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Methods This article builds on a previous publication, “Recruitment and retention in minority populations: Lessons learned in conducting research on health promotion and minority aging,” published in a 2000 issue of the Journal of Mental Health and Aging, which presented the individual accomplishments of the six funded centers. The general model of recruitment we proposed was based on the premise that the decision-making process leading individuals to participate or refuse participation in research is influenced by the social context of research participants and their community agencies as well as that of the researchers and their home institutions. As shown in, the model includes two perspectives, operating at three levels. Perspectives of the ethnic minority groups and researchers are based on their own cultural and structural styles and history and influence interactions at the macro or institutional level, the mediator or gate-keeper level, and the micro or individual level. The model's central tenet proposes that matches between the perspectives of ethnic minority groups and researchers across levels lead to recruitment success, whereas mismatches or conflicts between these perspectives at any level can lead to recruitment failure. Furthermore, we proposed that the levels and perspectives are not separate processes, but rather that they dynamically interact. The process by which the three levels and two perspectives interact is mediated at all times by culture in its broadest sense, that is, that of the institution, researchers, and community members.
We now provide an overview of lessons learned throughout the MAHP initiative and their implications for future recruitment and retention efforts. Results Macro Level Harvard Center Research At the macro level of the ethnic minority group perspective, that of the community agency, barriers stemmed in large part from the conflicting goals of the organizations, which often placed service demands in direct conflict with those of research. In many community agencies approached for recruitment, service demands were so overwhelming and time constraints so severe, that agency administrators felt they could not free staff time to participate in research. To exacerbate the situation, high employee turnover rates at community agencies caused many tentative research collaborations to fall apart, necessitating a redoubling of effort and time to forge new linkages that would lead to successful recruitment. At the macro level of the researcher perspective, that of the academic institution, barriers also presented themselves. We discovered, not surprisingly, that our academic institution was perceived as part of an elite power structure not invested in the welfare of the ethnic minority community and therefore not to be trusted as a partner in research. There was also tension between other major academic centers wishing to expand as well as local agencies that perceived this as a threat to their patient base.
Finally, competition among universities attempting to study the same groups created confusion for agencies in terms of who was doing what, with whom, and for what purpose. The result of this confusion was the feeling among agency administrators that the benefits of participation in research was outweighed by the costs.
A match in perspectives on the macro level occurred when both the community agency and the research organization were able to perceive a mutual benefit through collaboration. We offered a Chinatown community center and a Latino home care agency financial resources and research expertise to develop and implement a culturally informed dementia support group and Web site for Latina caregivers, respectively. It was essential to leave something behind in the community, rather than being perceived as just taking something away from the community. Sensitivity on the part of the research staff to agency concerns about the long-term commitment of our academic institution to their community was of critical importance.
It was important that we become advocates for the community within our academic institution. We needed to make clear to agency administrators the benefits of participation in the long run, while setting up a collaborative, concrete exchange of services between the university and the community that would be beneficial in the short run. Collaborator Research All of the collaborating MAHP centers described the importance of overcoming potential distrust of local community groups in their academic institution. Pointed out the failure of previous research to establish long-term relationships with community leaders as a major barrier to recruitment. They suggested that establishing this relationship requires a three-fold approach that focuses on respect for issues, needs, and “turf” politics of the target community.
One way they suggested that this can be accomplished is to develop and collaborate in partnership with a local community advisory group composed of members who are key stakeholders of local community agencies, community leaders, and other key local gate-keepers. They described the various ways that a community advisory group can help the research project, including the following: helping to determine which community members to contact for recruitment, and the best methods for reaching these individuals; helping researchers to better understand local politics, which often shapes who to contact and how; helping to ensure the cultural competence of all components of the research process; and, reviewing research instruments and assisting in interpreting data. They concluded that research groups focusing on research alone, as opposed to research and community support through intervention, will run into barriers in the community. They stressed the need for researchers to become familiar faces in the community as they communicated the benefits of research for the community.
The value of developing a constituency-based recruitment effort was shared by each of the other MAHP investigators, who all stressed the importance of working with local community advisory groups, either ones developed expressly for the purpose of the proposed research, or better yet, a preexisting group that has credibility within the community of interest. The community advisory groups played different roles across the different centers and engaged in different activities throughout the research process at any one center. Collaboration with a community advisory group was the most commonly cited enabling factor for recruitment at the macro level mentioned across all centers. As noted, it is ironic that future efforts at recruitment in certain communities may be hindered by a community's lingering bad taste for researchers who promised in good faith that they would remain a visible presence in the community after the end of their research, but when faced with the realities of limited funding, pulled back from this commitment.
Attempted to build trust for their study in the community from the onset of funding. The study was presented to the community as part of a larger university-wide effort that was already well established and respected by community members and called the Duke Center for Exploratory Studies in Older Minorities.
Every effort was made to highlight the purpose of the study: to promote the health of area elderly minority communities. Linkages with recognized minority institutions were emphasized, including area Black churches and North Carolina Central University (an historically Black university). The principal investigators who directed and ran the research studies were minorities themselves and understood the local culture and priorities of the community.
In an effort to build trust in the research staff, the Duke team hired recruitment and research staff who lived in the community and who shared a similar ethnicity, age, gender, and socioeconomic status with those they were attempting to recruit. Described the usefulness of their center's newsletter, published twice a year, which helped to build community support for their research. The newsletter presented brief descriptions of study findings and implications for health, presented the results of national studies related to health promotion and disease prevention, and provided information on how their participation in research was helping students obtain master's and doctoral degrees. They felt strongly that the altruistic motives that many research participants hold provide a strong motivating factor leading to decisions to participate in research.
Facilitating access to the research site was also considered an important enabling factor increasing research participation. Emphasized the importance of conducting the research in familiar settings, either at home or at a place conveniently located for the research participant. They provided transportation to the research site for study participants. The Harvard research team shared these concerns, and as a result, most interviews were conducted in the participant's home. For those caregivers that were working, interviews were also conducted in work cafeterias or local restaurants near the caregiver's place of work.
Although many researchers have described the church as a rich source of research participants for African American elders, cautioned that the entry phase of church-based recruitment efforts might not be cost effective because of the potential differing agendas between church leaders and researchers, with the former focusing on service outreach and the latter on research. The Harvard Center shared this view of the church based on our experiences with church pastors who were so overworked and understaffed that encouraging research participation was a low priority. In contrast, the African American church was the sole focus of recruitment for the University of Illinois Center for Health Interventions with Minority Elderly (CHIME), after efforts to establish their exercise program failed to attract participants in senior centers or senior housing sites. Speculated that their success in recruitment within the church setting was based on the existing social support network within the organization, which included church directors and other networking tools, such as church bulletins, newsletters, and radio service programs that provided avenues for information dissemination and program awareness. They also found it helpful to have older parishioners in leadership roles in the church as recruiters, similar to the other centers that relied on recruiters sharing the same characteristic of the target population.
Mediator Level Harvard Center Research At the mediator level of the ethnic community group perspective, community gate-keepers had the power to provide the research team referrals for recruitment. Barriers arose for several reasons. In the Chinese American community, we found that gate-keepers often wanted to protect families from social stigma by avoiding officially labeling a client as demented. Others did not encourage families to participate because they saw no real benefit to individual families for participating and did not believe in the overall benefit of research participation.
Gate-keepers were also critical in assuring subjects that confidentiality of information would be maintained. The most cooperative gate-keepers were those who believed in research themselves and who were able to personally identify individual elders and caregivers that they believed would also view research as important. We also found a higher yield of referrals working from the bottom up, that is, recruiting through hands-on service providers who had an intimate knowledge of the elders they served, rather than dealing with higher level administrators who had little direct contact with families. From the researcher perspective, barriers and enablers at the mediator level existed within the research team itself. Our multidisciplinary research team included individuals from many different academic backgrounds, including social gerontologists, medical anthropologists, psychologists, psychiatrists, ethnographers, and health services researchers.
Differences in disciplinary perspectives (e.g. Sociological, psychological, or anthropological) as well as research methodologies (e.g., quantitative or qualitative) resulted in pronounced differences in both the orientation and language used by research team members to describe research experiences and theoretical concepts. The research team was also multicultural and included individuals with different cultural backgrounds, beliefs, and social histories. These ideological and sociocultural differences, which began as barriers to effective communication among the research team, and thus to successful recruitment, were painstakingly transformed through open discussion and negotiation into enablers to recruitment. Collaborator Research described the importance of mediator-level factors that were crucial to successful recruitment and retention of Mexican American and European American elderly individuals for research in clinic and community agency settings. They also rated the relative importance of each factor according to whether they were essential, very important, or somewhat important to recruitment. They found it essential to match all aspects of their research to the culture of the targeted collaborators.
They also found it essential that the design of their research activities would have negligible impact on regular staff routines or the conduct of other studies of the research collaborators. Very important approaches included having preestablished relationships with potential study collaborators and giving regular updates on research progress and results. Providing outreach training and/or educational programs for study collaborators was of somewhat importance. In addition to rating the importance of recruitment strategies directed toward collaborators at the mediator level, also rated the importance of recruitment activities directed toward their collaborators' staff. Center Principle Investigator Research Projects The Drew/Rand Center on Health and Aging Focus: African Americans W. Allen Stroke risk assessment Oral health Memory disorders Community-based health screening and assessment Hispanic Healthy Aging Center Focus: Mexican Americans H.
Hazuda Determinants of exercise in elderly individuals Adaptation to subclinical disability in Hispanic elders Depression in Mexican American elders Recovery after major surgery in Mexican American elders Center for the Promotion of Health of Elderly African Americans Focus: African Americans H. 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. Placebo on blood and immune assays Harvard Center on Culture and Aging Focus: Multi-ethnic S. Levkoff Symptom recognition/help-seeking behaviors of caregivers for community-dwelling and institutionalized elders with dementia Qualitative and quantitative studies Developing a culturally-informed support group model for Chinese families UIC Center for Health Interventions with Minority Elderly (CHIME) Focus: Multi-ethnic T. Prohaska Exercise promotion of minority elderly individuals in senior centers Improving exercise and dietary behaviors in Black elders in public housing Effects of menopause/health promotion in older minority women Health behaviors of multiethnic Hispanic elderly individuals The Duke Exploratory Center for Research on Health Promotion in Older Minority Populations Focus: African Americans R. 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.
Center Principle Investigator Research Projects The Drew/Rand Center on Health and Aging Focus: African Americans W. Allen Stroke risk assessment Oral health Memory disorders Community-based health screening and assessment Hispanic Healthy Aging Center Focus: Mexican Americans H. Hazuda Determinants of exercise in elderly individuals Adaptation to subclinical disability in Hispanic elders Depression in Mexican American elders Recovery after major surgery in Mexican American elders Center for the Promotion of Health of Elderly African Americans Focus: African Americans H. 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. Placebo on blood and immune assays Harvard Center on Culture and Aging Focus: Multi-ethnic S. Levkoff Symptom recognition/help-seeking behaviors of caregivers for community-dwelling and institutionalized elders with dementia Qualitative and quantitative studies Developing a culturally-informed support group model for Chinese families UIC Center for Health Interventions with Minority Elderly (CHIME) Focus: Multi-ethnic T.
Prohaska Exercise promotion of minority elderly individuals in senior centers Improving exercise and dietary behaviors in Black elders in public housing Effects of menopause/health promotion in older minority women Health behaviors of multiethnic Hispanic elderly individuals The Duke Exploratory Center for Research on Health Promotion in Older Minority Populations Focus: African Americans R. 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. Barriers/Enablers Ethnic Minority Groups Researchers Macro Level Community Agencies Academic Institutions Barriers 1. Service demands 1.
Academic affiliation 2. Time constraints 2. Tensions between academic centers and local agencies 3. High turnover rates 3. Academic centers competing to study same groups 4. Short-term relationships 4. Focus on research alone Enablers 1.
Collaboration 1. Offer technical assistance 2.
Mutual gain/benefits to community 2. Recognize local history, cultural beliefs, and “turf” politics 3.
Relying on existing social support networks (e.g. Church-based) 3. Establish community advisory groups 4.
Piggybacking research onto existing study 4. Linkages to recognized community institutions?tvs 5.
Staff matching with ethnicity/culture of participant 6. Media advertisement: newsletters, radio, TV 7. Facilitating access: transportation and home interviews 8. Focus on research and service 9. Commitment that long-term efforts would continue beyond study duration Mediator Level Gate-Keepers Research Team Barriers 1. Protect clients 1. Interdisciplinary differences 2.
Avoid stigma 2. Multicultural differences 3. Dementia doesn't exist 4. No treatment available 5. No personal gain 6. Cultural bias against research Enablers 1.
Readily identify participants 1. Interdisciplinary differences 2.
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Believe research is important 2. Multicultural differences 3. Working from the bottom up 3. Tailoring reinforcements to the “cultures” of agency 4.
Gate-keepers involved in research 4. Focus groups to identify gatekeepers 5. Understanding cultural biases toward research Micro Level Individuals/Participants Interviewers Barriers 1. Distrust of research 1. Activist agendas 2.
Fear of stigma to family 2. Do not value research 3. Fear of losing services 3.
Length and comprehensibility of scales 4. Lack of confidentiality 5. Fear for safety 6. Schedule conflicts Enablers 1.
Want to share stories 1. Authentic connections 2. Want to improve the life of others 2.
Use of ethnography and qualitative research 3. Value research 3. Adapt research 4. Participant altruism 4. Avoid bureaucracy 5.
Confidentiality 5. Rely on existing networks 6. Provide phone numbers for information on study 7. Pilot instruments on population 8. Offer verbal or written instruments 9. Clear description of research design 10.
Ethnic matching of research staff and study participants 11. Ethnic matching of principal investigator and study participants 12. Rapport with family members 13. Understanding social meaning of illness/awareness of stigma attached to the illness label 14. Sensitivity to language culture, roll of family members in decisions to participate 15.
Employing project staff from the community. Barriers/Enablers Ethnic Minority Groups Researchers Macro Level Community Agencies Academic Institutions Barriers 1.
Service demands 1. Academic affiliation 2. Time constraints 2. Tensions between academic centers and local agencies 3. High turnover rates 3.
Academic centers competing to study same groups 4. Short-term relationships 4. Focus on research alone Enablers 1. Collaboration 1. Offer technical assistance 2.
Mutual gain/benefits to community 2. Recognize local history, cultural beliefs, and “turf” politics 3. Relying on existing social support networks (e.g. Church-based) 3.
Establish community advisory groups 4. Piggybacking research onto existing study 4. Linkages to recognized community institutions?tvs 5. Staff matching with ethnicity/culture of participant 6. Media advertisement: newsletters, radio, TV 7.
Facilitating access: transportation and home interviews 8. Focus on research and service 9. Commitment that long-term efforts would continue beyond study duration Mediator Level Gate-Keepers Research Team Barriers 1. Protect clients 1. Interdisciplinary differences 2. Avoid stigma 2. Multicultural differences 3.
Dementia doesn't exist 4. No treatment available 5. No personal gain 6. Cultural bias against research Enablers 1. Readily identify participants 1. Interdisciplinary differences 2.
Believe research is important 2. Multicultural differences 3.
Working from the bottom up 3. Tailoring reinforcements to the “cultures” of agency 4.
Gate-keepers involved in research 4. Focus groups to identify gatekeepers 5. Understanding cultural biases toward research Micro Level Individuals/Participants Interviewers Barriers 1. Distrust of research 1. Activist agendas 2.
Fear of stigma to family 2. Do not value research 3. Fear of losing services 3. Length and comprehensibility of scales 4.
Lack of confidentiality 5. Fear for safety 6. Schedule conflicts Enablers 1. Want to share stories 1. Authentic connections 2. Want to improve the life of others 2.
Use of ethnography and qualitative research 3. Value research 3. Adapt research 4. Participant altruism 4.
Avoid bureaucracy 5. Confidentiality 5. Rely on existing networks 6.
Provide phone numbers for information on study 7. Pilot instruments on population 8. Offer verbal or written instruments 9. Clear description of research design 10.
Ethnic matching of research staff and study participants 11. Ethnic matching of principal investigator and study participants 12. Rapport with family members 13. Understanding social meaning of illness/awareness of stigma attached to the illness label 14. Sensitivity to language culture, roll of family members in decisions to participate 15. Employing project staff from the community.