Introduction to the Science of Recruitment and Retention Among Ethnically Diverse Populations

Abstract

Recruitment and retention of research participants is evolving with the changing demographics of the American population, in particular its growing diversity. The cultural–historical background and sociopolitical conditions of each diverse group poses unique challenges in developing successful recruitment and retention methods and strategies. This critical collection of articles demonstrates important theoretical and conceptual frameworks that seek to address the shortcomings of previous models of recruiting diverse populations. Understanding the key components of cultural distinctions, such as values and beliefs, community cohesion, and collective history, has proven to be instrumental in reaching out to these diverse groups. This important strategy has allowed researchers to overcome the barriers that have been fostered in the past and has built the trust necessary to move forward into an inclusive approach to aging research. Not to be overlooked, an important factor to achieving success in recruitment and retention of diverse populations is having access to resources that allow for ongoing connection with research participants.

The contributing authors in this special issue have addressed one of the most critical concerns facing researchers, recruitment and retention, as we move toward developing an inclusive approach to aging research. When researchers use an inclusive approach to recruitment and retention, they begin by knowing and understanding the culture of the diverse groups that will be the focus of their research. This important beginning provides insight into selecting and applying particular conceptual and methodological approaches that inform and shape the overall research process (Dilworth-Anderson & Cohen, 2010; Dilworth-Anderson, Thaker & Burker, 2005). Accordingly, theoretical and conceptual frameworks that provide direction to and an understanding of a group’s culture inform recruitment and retention strategies. Furthermore, such frameworks allow for capturing the variation in cultural–historical backgrounds (e.g., values, beliefs, identities, and meanings assigned to experiences) and sociopolitical conditions (e.g., economic status and access to goods and services) of diverse groups. These backgrounds and conditions of diverse groups shape issues such as trust and barriers that researchers face in their recruitment process. Thus, as noted by Sood and Stahl in their preface to this issue, “There is ‘no one-size fits-all” way to address these issues.” (see page S5–S7).

The recruitment and retention models, approaches, and methodologies used by the researchers in this special issue reflect a concerted move toward developing a more inclusive science that addresses previous limitations involving diverse groups in aging research. More specifically, several of the authors have explicitly stated using an inclusive approach in their theoretical and conceptual models and methodologies to guide their recruitment and retention strategies. For example, a community-based participatory research (CBPR) framework, or versions of this framework, was used to inform their recruitment and retention process that allowed for addressing the variations in background and conditions of diverse older groups (see Chadiha et al.; Mendez-Luck et al.; Stineman et al.; Santoyo-Olsson et al.; Kanaya & Stewart; Lichtenberg). CBPR recognizes that communities can and do bring knowledge of their respective values, beliefs, and perceptions about involvement in research to help formulate recruitment strategies (Israel et al., 2003). Thus, a key feature of CBPR is its collaborative approach, which encourages researchers to equitably involve all partners in the research process and to recognize the unique strengths that each partner brings. CBPR integrates knowledge and action for mutual benefit of all partners, promotes co-learning, involves a cyclical and iterative process, addresses health from positive and ecological perspectives, disseminates findings to all partners, and necessitates a long-term commitment by all partners (Israel, Eng, Schulz, & Parker, 2005).

Williams and colleagues created a comprehensive model for recruitment and retention that was conceptually developed by using community outreach and education programs coupled with a social marketing approach, which used six guiding principles: product, price, place promotion, participants, and partners. Ejiogu and colleagues developed a multilevel and multifactorial recruitment and retention methodology that was informed by several streams of evidence from the extant literature on barriers to recruitment and the information and feedback from neighborhood stakeholders, local health professionals, governmental officials, and a community advisory board. Stineman and colleagues used a biopsychosocial model that allowed them to address recruitment, adherence, and retention in their study of fall prevention. Other researchers (see Sullivan-Marx et al.) used less explicit conceptual guidance as noted earlier, but developed recruitment and retention strategies that focused on principles that attended to building relevant partnerships, administrative issues, and issues of burden for those involved in the research.

Moving the inclusion paradigm even further, it is critical that we know much more about how recruitment and retention strategies are influenced by such factors as differences in research site characteristics, rural versus urban settings, geographic areas, cultural milieu, modalities of data collection (e.g., telephone interview, in-home interview, and blood sample collection), and the training of interviewers. The constellation of these differences can influence both explicit and implicit recruitment and retention approaches regarding who conducts the research, who and at what level participants are involved in the research, and ultimately the research findings. Several of the articles in this collection provide needed insight into and understanding of developing successful strategies to address these issues (see Manson et al. on issues of site characteristics; Ejiogu et al. on sampling in urban areas, and Allman et al. in rural areas; Ofstedal & Weir on geographic area issues; Chao et al. on cultural milieu issues; Allman et al. on data collection modalities issues). Ofstedal and Weir clearly note that in the Health and Retirement survey, well-trained interviewers overcame most, if not all, of the differentials for middle-aged and older participants, by race and ethnicity, and even for biological data collection.

Researchers have found other factors that can inform how best to recruit and retain diverse populations in aging research. Wendler et al. (2006) found only very small differences in the willingness of minorities, most of whom were African Americans and Hispanics, to participate in health research compared with non-Hispanic whites. Instead, their findings speak to the need for researchers to examine their organizational research issues and methodological approaches, which ultimately influences developing a better science of recruitment and retention. Several of the articles address the concerns that Wendler and colleagues identified. Manson and colleagues’ article directly speaks to the importance of staff turnover, organizational culture, and agency status (private, trial, or federal) in affecting successful recruitment and retention in studying diabetes among American Indians. They state, “Understanding successful retention must reach beyond individual characteristics of participants to include features of the settings that house the interventions” (see page S73–S81). Equally important, as discussed by Sullivan-Marx and colleagues, is the role trained staff of the research organization play in having knowledge about study participants and relating to participants’ cultural and ethnic backgrounds.

The article by Williams and colleagues in this issue, best exemplifies Wendler and colleagues’ observation that increasing minority willingness to participate in research is facilitated through the examination of research methodology. The Washington University Alzheimer’s Disease Research Center adopted a recruitment policy that all new enrollees must complete the entire longitudinal protocol (see full article for protocol requirements). In the face of declining enrollment in the African American sample, Williams and colleagues reported that a lumbar puncture waiver for African Americans was implemented. With this waiver as part of a comprehensive recruitment plan, the researchers reported that the number of African Americans had significantly increased overall, with participation of those allowing lumbar punctures doubling even though there was a waiver in place. These researchers clearly show that going back to the “drawing board” in designing research protocols and recruitment strategies for Alzheimer’s disease research can positively affect the inclusion of older African Americans, a group at highest risk for developing Alzheimer's (Alzheimer’s Association, 2011).

One remaining key critical issue, trust, is important in this special collection of articles. Trust is addressed by almost all the articles with successful strategies, whether explicitly or implicitly. Because trust is gained over time, and time creates a history of being trustworthy, it is important for researchers to have ongoing and frank discussions with their study participants in minority communities in order to build and retain trusting relationships. It is equally important that researchers understand a group's history in order to build trust. For example, being sensitive to and addressing the history of African Americans regarding the historical memory of the Tuskegee Study and other historical memories is very important in conducting certain types of research (e.g., biomarker data) in the African American community (Corbie-Smith, Thomas, & St. George, 2002; Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999). Building trust is also embedded in researchers understanding a group’s values, belief systems, and ways of thinking and behaving. Such understanding provides insight into issues such as the type of research projects groups value, how diverse groups interpret and respond differently to recruitment efforts, and the expectations the groups have once they agree to participate. The article by Santoyo-Olsson and colleagues speaks to many of these issues in their discussion on successfully using a systematic approach to building trust by using in-person outreach and screening, holding programs using a diverse staff, holding study components in local settings, providing transportation, and assisting with childcare.

Last, the ability for any researcher to successfully recruit and retain diverse groups of older people in aging research requires knowing the cost and having the resources to meet these costs. Few studies, however, evaluate the cost-effectiveness of the recruitment strategies used to recruit and retain participants in aging-related research (Clark, Neighbors, Wasserman, & Armstrong, 2007). Several articles in this special collection do, however, address cost issues. For example, Mendez-Luck and colleagues provide a detailed table and discussion on both time and costs for their studies, including nonfinancial costs (e.g., number of visits involving the principal investigator) and financial costs (e.g., total mileage cost and event costs). The value of such detailed information can provide a blue print for future studies.

In summary, this special issue is needed by the research community. The American society is more diverse than ever, and a large segment of this population includes older diverse groups, especially minority elders. This issue can serve multiple audiences beyond researchers, such as students, funders, and policy makers, that need further knowledge about how the nation can better prepare itself for addressing the care and needs of older people.

Funding

This introduction was supported by a 5-KO7-AG023113-01 (P. Dilworth-Anderson).