Researchers often struggle to enroll adequate numbers of underrepresented groups in their studies. The 1994 requirement by the National Institutes of Health to ensure representation of ethnic minorities is an attempt to meet this goal, but recruitment of these populations into research remains difficult. Researchers have tried several different methods to convey to the Black community the importance of participating in research but with mixed results. This article discusses the importance of increasing Black recruitment in Alzheimer’s disease (AD) research, as well as barriers to recruitment. We conclude by describing one approach to the recruitment issue.
Black Individuals and Alzheimer’s Disease
Research has identified both age and gender as risk factors for developing AD, and because women typically live longer than men, the risk is greater for older women (Alzheimer’s Association, 2009). Race and ethnicity are also emerging as risk factors. In 2002, the Alzheimer’s Association described a “silent epidemic” of AD in the Black community. In individuals who have a first-degree relative with AD, Black individuals are almost 44% more likely than White individuals to develop the disease (Green et al., 2002).
Genetic risks also seem to be more significant in Black groups. For example, high blood pressure and diabetes are linked to AD, and 65% of Black Medicare beneficiaries have hypertension, compared with 51% of White beneficiaries (Murray, 2000). Black individuals are also at a 60% greater risk for developing type 2 diabetes and have a greater risk of stroke and vascular dementia than White groups (Shadlen, Larson, & Yukawa, 2000).
Black individuals are at an additional risk for AD because they tend to be diagnosed at a later stage of disease than White individuals. The reason for this later diagnosis is not clear, although economic concerns and lack of access to medical care may pose barriers. In addition, the disease may affect Black individuals differently and more aggressively (Shadlen, Larson, Gibbons, McCormick, & Teri, 1999), and evaluation techniques may be culturally and ethnically biased (Jones, 2003). It may also be that Black individuals tend to wait to see a clinician about memory changes until it is clearly a problem (Clark et al., 2005). The problem is significant because while there is no cure for AD, drug treatments to slow the progression of memory loss are most effective in the earlier stages of the disease (Reisberg et al., 2003; Tariot et al., 2004).
Black individuals are seriously underrepresented in clinical drug trials for AD (Alzheimer’s Association, 2002; Griffith, Lichtenberg, Goldman, & Payne-Parrish, 2006). This is of particular concern because there is some evidence of differences in drug responses of different racial and ethnic groups (Evans et al., 2003). The implication is that if a cure is found, it may not be equally effective in all racial and ethnic groups. Additionally, some studies have suggested that lifestyle risk factors for AD may not be the same for all people. For example, studies have shown that greater social resources are associated with reduced cognitive decline (Barnes, Mendes de Leon, Wilson, Bienias, & Evans, 2004; Fratiglioni, Wang, Ericsson, Maytan, & Winblad, 2000). Yet, while Black individuals tend to have lower levels of social resources than White individuals, there is no evidence that fewer social engagements result in greater decline in Black populations (Barnes, Mendes de Leon, Bienias, & Evans, 2004). Clearly it is important for Black individuals to participate in AD research to ensure the legitimacy of reported risk factors and the effectiveness of new treatments for their race.
Barriers to Research Participation by Black Individuals
Minority recruitment into research usually takes longer than initially estimated, and fewer participants than expected are recruited. Barriers to participation in AD research regardless of race include caregiver stress, denial of the need for help, the view that the reimbursement is not worth the effort, multiple diseases that limit functional abilities, denial of personal vulnerability, the time involved in participation, lack of evidence of personal benefit for participation, negative personal and family attitudes toward research, distrust of the research process, and fear of adverse reactions to drug trials (Connell, Shaw, Holmes, & Foster, 2001; Daunt, 2003).
An additional barrier for the Black community is a low perceived threat of developing AD (Connell, Scott Roberts, McLaughlin, & Akinleye, 2009). Roberts et al. (2003) found that White individuals perceived a greater threat of developing AD than did Black individuals, although current research suggests the threat is much greater for Black individuals (Green et al., 2002). This finding points to the need to educate the Black community about their risks for AD.
Cultural attitudes have also been identified as barriers to Black individuals’ participation in research (Areán, Alvidrez, Nery, Estes, & Linkins, 2003; Daunt, 2003; Kennedy, Mathis, & Woods, 2007). Traditionally, Black individuals have felt an obligation to cope with illness by taking care of each other within their family and social network, rather than reaching out for help from the medical or social work community. This sense of obligation means Black individuals are less likely than White individuals to use nursing home care or adult day care (Kersting, 2001). In addition, cultural beliefs may lead to the view that diseases are normal and natural occurrences (Flaskerud & Nyamathi, 2000) and that memory problems are a normal part of aging.
Low education levels can be another barrier to participation in research by Black individuals. Lack of knowledge about AD and other chronic diseases results from low literacy and few contacts with the medical system, and contributes to delay in seeking medical attention by some Black individuals (Welsh, Ballard, Nash, Raiford, & Harrell, 1994). Often, the family will seek medical assistance when a problem behavior, such as wandering or incontinence, is encountered. If a family is not seeking medical attention, it is unlikely they will know about research opportunities or understand how to enroll a family member in a study.
Economic factors may also be involved. Lower income Black families may have little or no access to health insurance and therefore do not seek medical assistance from the major medical facilities where most research projects take place (Welsh et al., 1994). In addition, these facilities are often located in large cities, and transportation may be a barrier for lower income and rural Black families (Daunt, 2003). One other consideration for lower income Black families is time off from work to transport an older family member to physician and research appointments (Daunt, 2003). Often, families cannot afford to lose their income for the time it takes for such appointments.
Finally, the most significant barrier to participation for Black individuals may be distrust of doctors, the medical community, and the government (Corbie-Smith, Thomas, & St. George, 2002; Daunt, 2003). While the most common reason for this distrust has been the infamous Tuskegee Syphilis Study, the roots of distrust were sown long before the beginning of that study in 1932 (Gamble, 1997). The research conducted on Black individuals during the pre- and post-Civil War eras provides glaring historical examples of the ways in which the medical community and the government have mistreated Black individuals (Gamble, 1997). For example, before the Civil War, slaves were used as subjects of medical experiments without their consent because they were considered personal property and did not have the right to refuse participation (Gamble, 1997). Following the Civil War, Black folktales often speak of “night doctors,” who were said to steal both living and dead bodies at night and sell them to physicians for medical experimentations (Gamble, 1997). These historical events and folktales led to a general distrust of White physicians and medical research within the Black community. Some Black individuals do not trust the medical and research communities because they fear that studies, such as those on HIV, birth control, and sickle cell anemia, are conspiracies for genocide of the Black people (Gamble, 1997).
Many Black persons also believe the White community does not value the lives of Black individuals, a belief that is sometimes reinforced by their experiences with the medical community. According to Gamble (1997), there is a perception among Black groups that they are treated differently by medical professionals than their White counterparts solely because of their race (Kennedy et al., 2007). It is not entirely clear why there are racial disparities in the provision of health care services, but the medical community must recognize that racism plays a role in these findings and work to eliminate real or perceived racism, establishing trust in the health care system and increasing participation in research by Black individuals.
Laypeople as Educators
The literature describes help provided by laypeople, most commonly referred to as lay health advisors, community health workers, lay health workers, natural helpers, peer educators, outreach workers, and promotoras. One of the recommendations of the Institute of Medicine (2003) was to support the use of community health workers to help decrease health care disparities.
Lay health advisors (LHAs) operate on the principle of a natural helper—that is, a person with whom others in their community feel comfortable talking about topics such as health issues. Researchers train the natural helper about the particular topic of interest, and once the training is completed, the natural helper becomes an LHA (Bishop, Earp, Eng, & Lynch, 2002). Typically, LHAs are volunteers who may or may not be reimbursed for their services. (Health Resources and Services Administration, 2007). LHAs work out of an interest in educating others about important health topics. According to Earp et al. (1997), LHAs provide:
- Emotional support to community members by listening to health and other concerns.
- Instrumental support by helping community members obtain doctors’ appointments or offering transportation to medical facilities.
- Instructional support by educating community members about specific health concerns.
- Praise for community members when they make and follow through with appointments.
LHAs have been used successfully in health education programs on breast cancer (Earp & Flax, 1999), prostate cancer (Ford, Havstad, & Tilley, 2003), diabetes (Holtrop, Hickner, Dosh, Noel, & Ettenhofer, 2002), sexually transmitted diseases (Thomas, Eng, Earp, & Ellis, 2001), smoking cessation (Woodruff, Talavera, & Elder, 2002), nutrition (Navarro, Rock, McNicholas, Senn, & Moreno, 2000), and other disorders. These programs have been used with several different groups of people, including rural Black groups, Hispanic groups, high school students, and migrant farm workers.
Laypeople have also been trained as outreach workers, sometimes called community outreach specialists and community health workers. Eng and Young (1992) suggested that the role of the outreach worker is to educate and persuade the public to access and use health care services. In contrast, the LHA seeks to educate the community and combine community resources to advocate for improvements in area health care systems. The community health worker has many of the same responsibilities and credentials as the community outreach worker but typically acts as a direct liaison between the community and health care professionals, and focuses on specific issues, such as AIDS and maternal-child health education.
The literature also describes the roles of promotoras as workers who provide outreach and health education to members of their own community. Typically, they are volunteers who receive on-the-job training. They are effective in reaching underserved populations because they extend the community health worker model by coming from the same neighborhood, speaking the same language, and sharing life experiences with community members (Savinar, n.d.). Studies have described multiple roles for LHAs, including support of participant recruitment and data collection (Rhodes, Foley, Zometa, & Bloom, 2007). Their effectiveness has been attributed to the high level of trust LHAs were able to establish with community members.
In a Cochrane Database review of the effectiveness of lay health workers (LHWs) in primary and community care (Lewin et al., 2005), the researchers analyzed 43 studies. “A ‘lay health worker’ was defined as any health worker carrying out functions related to health care delivery; trained in some way in the context of the intervention; and having no formal professional or paraprofessional certificated or degreed tertiary education” (Lewin et al., 2005, Methods section, “Types of Participants”). The authors provided a historical account of the development of LHW roles and emphasized the need for rigorously designed research to evaluate the effectiveness across a variety of settings and health problems.
In summary, the literature describes several titles of laypeople who address health education and promotion, screen for chronic diseases, and work with community agencies to improve health services and outcomes. However, the existing literature describing LHWs, lay educators (LEs), promotoras, and community health workers has focused primarily on education, screening, or interventions, not research recruitment. While the LEs in our case study shared many of the same characteristics as these workers, the goal in our program was to educate community members about AD with the specific goal of recruiting those who met research criteria.
The Case Study: Our Experience
At the time we established our Alzheimer’s Disease Center (ADC) and after receiving Internal Review Board (IRB) approval, we initiated efforts to form a Black Advisory Committee. We invited a variety of Black individuals to serve, among them a retired nurse, a representative from the local AD group, a retired businessman, and a professor from a local college. This Committee assisted us in planning and reviewing our work at strategic points. They were particularly helpful as we discussed the lack of minority participation in our research.
Our Black Advisory Committee suggested that the Black community in our area was undereducated on the topic of AD, was hesitant about participating in research, and would be more likely to trust a member of their community than a White member of the research team. Since LHAs have been successfully used as community educators and our assumption was that the greater barrier to Black individuals’ participation in research was lack of knowledge about AD, we decided to use LEs to recruit participants into our research program. Three people from the community were identified as potential LEs to educate the Black community on AD and the importance of participation in AD research. Two were recommended by our Black Advisory Committee and one self-referred from a community organization.
Our original criteria for selecting LEs were that they were identified as a natural helper in their community and were Black individuals age 65 and older. In addition, we looked for evidence of understanding AD and the importance of research participation, and a willingness to share that understanding with their community. The requirement of age 65 and older was not based on the literature, but it was reasoned that if the LE met the study age criterion and completed the study, the first-person experience as a participant would lend validity to recruiting efforts and prepare the LE to more effectively answer questions. However, after several individuals younger than age 65 were identified as qualified and interested in the LE program, that criterion was dropped.
LEs in the ADC program perform the combined responsibilities of the LHA and community health worker. They provide education about dementia to the community through presentations and one-on-one contact, promote participation in health research, act as a link between the community and the investigators, and advocate for the Black community by providing guidance to the research team on the community education and health care needs related to AD.
Prior to beginning training, the prospective LEs were expected to become participants in the research program, or if the LE was not old enough, to observe the participant experience. This requirement gave prospective LEs an opportunity to decide whether this project was one they could truly promote to the Black community, and it allowed them to answer their community members’ questions about the research process from personal experience. An unexpected benefit of this requirement was that the ADC staff evaluation ensured the LEs were cognitively fit to serve in these positions. Because the research included neuropsychological testing, one LE did not meet the requirements to participate in the study and was not retained in the LE program.
Because of the amount of time and effort required, the project leaders agreed that the LEs’ efforts should be compensated. They were not formally employed by the research team but were paid as consultants. As they were not employees of the university, the LEs had more freedom to provide the team with their honest opinions about research procedures and recruitment of Black community members. Also, because the LEs were research participants, community members were more likely to overlook the fact that they were being compensated for providing education.
Training the Lay Educators
The LE training program consisted of 12 hours of classroom work over a 3-month period, divided into six 2-hour sessions. During training, the ADC Education Core staff reviewed the purpose and mission of the ADC and taught the LEs about AD, including risk factors, symptoms, and treatments. At the end of each session, LEs had a mock question-and-answer session in which the committee members asked the LEs questions they might encounter following presentations to the public. In addition, LEs were given homework assignments, including reading chapters from The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Mace & Rabins, 2001) and viewing several videos on AD.
During the training, each LE prepared a slide presentation covering basic information on AD and the ADC; in addition to the content, the LEs were responsible for slide background and font, as well as flow of the presentation. When the LEs presented their slides, Education Core committee members acted as an audience and asked typical questions at the close and made suggestions for changes to the presentations. When the committee felt comfortable with the performances of the LEs, the LEs were encouraged to begin setting up presentations with community organizations and agencies.
The LEs then began contacting the ADC Education Core Coordinator with presentation dates, times, and locations. The Coordinator had computer equipment, brochures, evaluation forms, and ADC referral cards ready for the LEs to pick up the day before a presentation. The evaluation forms were designed for audience members to evaluate the presentation and the presenter, which provided the Education Core committee members with feedback. In addition, LEs were informed that committee members might attend their presentations to evaluate the presentation and audience response. LEs gave referral cards to audience members to refer themselves or family members to the ADC program. The referral cards satisfied the IRB requirements for human participant protection; signed cards granted permission for the investigators to contact the audience member about the ADC program but did not represent a commitment to participate.
Initial Problems Encountered
Several problems were encountered with the start-up of the LE program. One LE was particularly excited about the opportunity to educate the Black community about AD and set up multiple presentations within a relatively short period, monopolizing the presentation equipment. This problem was remedied by limiting the LEs to two presentations per month, however, without limiting one-to-one contacts. Booth displays at conferences and health fairs were encouraged in addition to presentations.
A second problem was that only one of the LEs initially met the expectation that LE presentations would produce legitimate participant referrals to the ADC. Although one LE met this expectation, the other did not obtain any referrals from presentations or from personal contacts within the community. When this expectation was re-emphasized, the LE did generate a large number of referrals from subsequent presentations, but when the staff made contact with the persons referred, none were interested in participating.
A third problem was a lack of understanding by the LEs about the target audience, a problem that has also been encountered by other lay advisor programs (Bishop et al., 2002). While the Education Core committee trained the LEs to do presentations for the Black community, the LEs also responded to other requests (i.e., inservice sessions for adult day care center staff, presentations to a White caregiver support group and to a group of employees at a community health center). None of these presentations targeted the appropriate audience nor generated referrals to the ADC.
These issues encountered in establishing the LE program highlighted the difficulty in identifying appropriate community members to act as LEs in representing the ADC. Of the three individuals originally identified as LEs, only one remains. However, this remaining LE is an active and valued member of the research program and has played a vital role in the success of the ADC recruitment efforts.
Although our LE program is still relatively young, it has already had several positive results. First, the number of presentations to the Black community has greatly increased (Figure 1). Prior to the LE program, no presentations had been given to the Black community for 4 months. Six months after training, the LEs had completed 17 presentations at conferences, including booth presentations. Regardless of referrals, this is an important development in educating the Black community about AD risk factors, symptoms, treatments, and research opportunities.
Figure 1. Number of Presentations by Alzheimer’s Disease Center Personnel to Black Audiences by Grant Year.
In addition, enrollment of Black individuals into the ADC program has increased. At the time of implementation of the LE program, Black participation was 12%. By the end of Year 5, the participation rate was 30% (Figure 2). At the end of Grant Year 5, 135 Black community members had been enrolled into the ADC program, and more than half of those participants were enrolled as a direct result of the LEs’ efforts.
Figure 2. Cumulative Number of Black Research Participants by Grant Year.
Finally, and possibly most important, the LEs have identified some barriers to research participation by the Black population. For example, one LE reported that the amount of information contained in the informational packet mailed to potential participants was overwhelming to many of those he had referred to the ADC. He suggested that only the most important information be mailed and the rest be discussed with participants at their first visit to the ADC; he suggested the various forms be color coded for easier identification. He also noted that the requirement for control participants to bring a family member to the initial interview was a barrier to participation for some people. He suggested this be made a suggestion rather than a requirement, and then if staff had concerns about the participant, they could contact the family member for a telephone interview. The LE’s suggestions were integrated into the intake process.
The LE who has remained active in our program reported that it is not enough for him to be seen in the community and to give presentations on the research. He also takes the initiative to follow up with every person who expresses an interest in participating. He has spent hours contacting potential participants to make sure they understand the evaluation process and keep their scheduled appointments. While this was not initially an expectation of LEs, it has become a vital part of recruiting Black individuals into the program.
The LE has stressed to the project leaders the importance of first educating the community about AD and the need for research before trying to obtain most referrals. He noted that a person may need to hear this information several times before agreeing to participate in research. The LE reported that he often has more success obtaining referrals when he is able to speak one on one to potential participants. For example, in an audience of 25 people, he received two referrals by speaking to interested persons following the presentation, and he spent enough time talking with these individuals to know they were interested in being potential participants for the program. This is important because clinical staff can now spend less time calling individuals who are not true potential participants and instead devote more time to performing evaluations. The LE has also followed up with the clinical staff and the referred individuals to make sure none of his referrals were lost due to oversight.
Overall, the LE reports that he enjoys his work in the community and with the clinical staff. Open lines of communication between the LE and program staff have enabled the LE to notify the staff of any problems he encounters, which benefits both the program and the LE. The staff is notified of potential recruitment barriers, and the LE is able to maintain high satisfaction with his work.
Initially, we decided to require the LE to meet all criteria of the study and to enroll as a research participant. We anticipated that a person who had experienced the study firsthand would be better able to advocate for the research and better prepared to address concerns and questions of those who were considering participation. We included a picture of the LE undergoing testing in the slide set used for recruitment. Subsequent LEs did not participate in the study as they did not meet the age requirement but observed an evaluation to appreciate the various aspects of the research protocol. From our limited experience, we would recommend selecting an LE who is within the same age group as the individuals to be recruited, if possible.
It takes time and patience on the part of program staff to find committed community members who understand the potential opportunities, responsibilities, and limitations of the LE position. Our plans were to expand the LE’s responsibilities to include communicating with participants regarding their annual follow-up evaluation and to contact Black ADC participants to enroll in smaller funded cohort studies. However, the LE position was discontinued when the ADC reorganized after losing federal funding.
Levkoff and Sanchez (2003), in summarizing the work from the Centers on Minority Aging and Health Promotion, noted that community advisory groups were engaged in a variety of activities and roles in the various centers. They found that working with a community advisory group was credited most frequently as an enabling recruitment factor. In our ADC, the community advisory group not only steered us toward use of an LE but also provided the name of a person they recommended.
In a relatively short period, our LE program has contributed to a significant increase in the number of presentations on AD given to the Black community and the number of Black participants enrolled in our ADC program, but the results have not come easily. It takes time and patience on the part of research staff to identify community members who are not only respected by their community but also willing to dedicate their time, make a commitment to educating the community, and recognize their responsibilities and limitations. Our initial efforts were rewarded with our finding a dedicated and caring LE who takes the time to connect with the community and to follow up with the individuals he refers to the ADC. Although recruitment of Black individuals in AD research is still challenging, the LE program has led to significant progress in our efforts to meet enrollment expectations, has fostered links between the university and the Black community, and has furthered our understanding of the barriers we create with our recruiting practices.
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