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Correspondence: Address correspondence to Peter S. Reed, Center on Minority Aging, Institute on Aging, School of Public Health, University of North Carolina at Chapel Hill, 720 Airport Road, CB 1030, Chapel Hill, NC 27599. E-mail: preed{at}email.unc.edu
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Key Words: Minority elders Research participants Partnerships
| Background |
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There are a variety of explanations for low inclusion rates of African Americans in research. One common explanation, highlighted in numerous studies, is the influence of African Americans' distrust and suspicion on willingness to participate in research conducted by the White-dominated medical and research communities (Freimuth et al., 2001; Gorelick, Harris, Burnett, & Bonecutter, 1998; Nápoles-Springer et al., 2000; Sengupta et al., 2000). In their study of participation in AIDS clinical trials, Sengupta and colleagues (2000) found that distrust of research institutions was the strongest contributor to a lack of willingness to enroll. Specific examples citing exploitation of African Americans in research, such as the Tuskegee syphilis trial, are often provided as explanations (Freimuth et al., 2001). Still, there may be a general underlying fear in the African American community about being used as "guinea pigs" (Gorelick et al., 1998).
Continued difficulty involving older African Americans in research warrants a variety of approaches for addressing the problem. There is some encouragement from studies that achieve success both in identifying essential components for successful recruitment (Dennis & Neese, 2000) and in advocating the use of multiple methods for recruiting diverse samples (Gilliss et al., 2001). Some studies report that the most successful recruitment methods are those utilizing face-to-face methods (Gilliss et al., 2001; McNeilly et al., 2000). These studies may be tapping into the oft-recognized need to remain cognizant of, and sensitive to, the historical, social, and cultural values and interests of the targeted population (Dennis & Neese, 2000; Fitzgibbon et al., 1998; Sinclair et al., 2000; Young et al., 1996; Zhu et al., 2000). An emerging strategy for incorporating these characteristics into tailored encouragement for participation is the use of community involvement in the recruitment and research process, which allows the community and its leaders to have a voice vis-à-vis the overall research or intervention methods and agenda (Coleman et al., 1997; Fouad et al., 2000; Gorelick et al., 1996). This approach helps facilitate recruitment success by developing collaborative and working relationships between researchers and community members to achieve consensus on goals and objectives (Levkoff, Levy, & Weitzman, 2000; Sinclair et al., 2000).
The importance of partnerships between researchers and communities, with community participation contributing to the success of research and health promotion programs, has been well described (Clover, Redman, Forbes, Sanson-Fisher, & Callaghan, 1996; Gorelick et al., 1996; Lemkau, Ahmed, & Cauley, 2000; Levine, Becker, & Bone, 1992). Often termed "participatory research," or "participatory action research," this collaboration between communities and researchers was succinctly defined by George, Green, and Daniel (1996) as "systematic investigation, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting social change" (p. 7). Implicit in this definition is a mission consistent with increasing the involvement of underrepresented groups in order to reduce health disparities. Participatory research, offering community input into any academic endeavors, may help reduce power differentials between the researchers and community members, producing equal relations and contributions for all interested parties (Cornwall & Jewkes, 1995; Mason & Boutilier, 1996). Increasing control of older African Americans over the research process may offer a mechanism for alleviating concerns about exploitation and encourage willingness to participate. Although this project does not fully incorporate the principles of participatory action research, it does attempt to increase community involvement through the use of a community research advisory board.
In recognizing the benefit of community partnerships, the question remains of how to gain access to the older African American community. One commonly used organization for accessing the African American community is the church (Gorelick et al., 1996; Levine et al., 1992). The church is a central feature of the African American community, functioning as a source of social support and collective social identity (Eng, Hatch, & Callan, 1985; Hatch & Derthick, 1992; Scandrett, 1994). Because of its importance, it serves as a logical setting for entering the African American community and provides an organized body replete with community members and leaders. To evaluate the use of the church as a portal of entry into the older African American community, the University of North Carolina (UNC) Center on Minority Aging developed the Durham Elders Project.
The Durham Elders Project
The Durham Elders Project was a general health survey of older African Americans in Durham, North Carolina. The UNC Center on Minority Aging is one of six Resource Centers for Minority Aging Research funded by the National Institute on Aging, the National Institute of Nursing Research, and the Office of Research on Minority Health. The exclusive inclusion of older African Americans in lieu of other minority groups in this project is consistent with the Center's mission and is based on the predominance of African Americans among minorities in North Carolina. According to the North Carolina Division of Aging, minority groups constituted 18% of the population of adults age 60 and over, with 95% of these being African American (North Carolina Division of Aging, 2001). Thus, given the region's demographic distribution, the project's focus on African Americans is imminently valuable.
One of the major purposes of the Durham Elders Project was to evaluate the effectiveness of the Center's Community Liaison Core in establishing relationships with the older African American community. Ties with the community were seen as a mechanism for bringing the community into partnership with researchers on a broad level. This partnership includes endorsement of research as a mechanism to provide social scientists with intimate knowledge of the community and to increase minority participation in the research study.
This article describes a process evaluation of the community and church-based strategy used to recruit a convenience sample of study participants for the Durham Elders Project. Generally, process evaluation is a systematic effort to determine whether the planned activities of a research project or intervention were conducted as intended (Fink, 1993). In this case, the process evaluated is not that of intervention activities, but instead considers the effectiveness of the various components driving the recruitment of older African Americans. It is not intended to be a comprehensive work on strategies for recruiting older African Americans, but rather a brief description of the process used in one project and the associated successes and challenges. It is hoped that by highlighting some of the lessons learned for addressing these challenges, this descriptive work will provide insight and direction for researchers looking to recruit older African Americans into health and social research.
| Recruitment Procedures |
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The advisory board consists of 13 members from a variety of professions, including an actuary, professors, pastors, attorneys, community church members, and retirees. All of the members have a basic understanding of the purpose of research and have a strong relationship with the older African American community. Additionally, all of the members are African American, with 4 of the 13 being female. As stated, the members hold strong ties to the community, with representation from the Durham Committee for the Affairs of Black People and several African American adult fraternities and sororities, as well as area churches. Therefore, the board is able to provide the Center's projects both with expertise as to the most appropriate methods for research and with entrée into community churches and organizations. Essentially, the goal was to establish an expert panel of individuals spending their lives and careers in the community of interest. Such representation, although not necessarily reflecting the community in some dimensions such as education and economic resources, did offer the strongest possible aggregate knowledge of the community.
One point to note is the unique resources available in this geographic region. In the Triangle region of North Carolina, there are three major research universities and a wealth of opportunities to include a variety of experts who may not be available in other areas. When creating a community research advisory board for any project, it is important to utilize the resources available. Thus, researchers should carefully consider their own region and involve the most appropriate people. For example, researchers in more rural areas would want to find key informants, or those most involved and respected in the community, irrespective of their working knowledge of research.
Once established, the research advisory board directed the Community Core in its activities to develop relationships with community churches and their members. The board identified a demographically diverse set of area churches most likely to collaborate with the Center. Although the churches selected were identified in part by the affiliations of the board members, the primary mechanism was through a deliberate determination of a set of churches with a range of socioeconomic resources. This determination was based on the collective wisdom and comprehensive understanding of the community afforded by the board members. Although it is possible that there are differences between the participating churches and those not selected, the intent of the board to choose a diverse set of churches should help address this concern. Concern over selection bias is also alleviated by the fact that the project received no refusals from any of the churches approached. This lack of refusals reduces suspicion that a church's consent to participate is linked to some attribute varying among community churches.
A key point in terms of the relationships developed is that they were not intended specifically for the purposes of the Durham Elders Project, but as active, ongoing, and mutually beneficial linkages. As pointed out by Levkoff and colleagues (2000), the community should become active partners in research. The Community Core intended not only to recruit church members as research participants but also to actively elicit their goals and needs to nurture an environment of collaboration. By developing relationships, the Center on Minority Aging was able to offer the churches ongoing health education and service programs suited to their interests. These initiatives included health fairs, talks on foot care, workshops on osteoporosis prevention, and a forum on social security.
With these collaborative relationships established between the Center and community churches, the Durham Elders Project was formed to determine the usefulness of these relationships for recruiting research participants. Involvement began by introducing the topic of the survey to the churches. Researchers and members of the community research advisory board met with church leaders and described the research project to gain permission and support. With the pastors' support, those researchers who are African American, and the board members, made presentations at a variety of church activities, including senior activity groups, choir rehearsals, and church services. During these presentations, church members were made aware of the Center on Minority Aging and the Durham Elders Project and were invited to participate. Church members were given information cards to fill out and return to the researchersproviding their name, phone number, and addressto indicate their willingness to be contacted for participation in the study.
The setting for the questionnaire administration varied from church to church. Essentially, there were two basic forms by which participants agreed to participate and were interviewed: as individuals and through interviews conducted during church activity groups. In the individual strategies, researchers contacted church members directly. Some of the participants agreed to have an interviewer visit them in their home to conduct the interview, whereas other participants agreed to have the interviewer meet them at their church. In addition to the various interview strategies, efforts were taken to assemble a diverse group of interviewers. Of the 10 primary interviewers (4 others conducted only 13 interviews), there were 5 African Americans, 4 Whites, and 1 Asian American; 8 of the interviewers were female; and they ranged in age from 21 to 30 years old. The demographic composition of the interviewers perhaps influenced individual decisions by the older adults both as to whether they would participate and in the interviewing strategy that was most appropriate (i.e., in the home vs. the church).
In contrast, visiting the church activity groups included many people being individually interviewed at their church during a common time. In some cases, participants were recruited and interviewed simultaneously in conjunction with some preexisting church activity. For example, a group of interviewers would visit a church's senior group or choir practice and make a presentation on the project. Following the presentation, church members would consent to be interviewed, and the interviewers administered the survey on a one-on-one basis. In other cases, there were interviewing sessions at the churches that were not a part of a preexisting church activity but instead were church-supported "research days." Usually occurring on a Saturday, church members would be invited to stop by the church for an hour to have some refreshments, socialize, and participate in the interview.
Although each of these strategies involved various benefits and drawbacks, the use of multiple methods is indicative of the flexibility necessary when recruiting older minorities for health and social research. Illustrated among this group of African American churches, a uniform recruitment procedure and survey administration setting is not appropriate. Instead, church-based recruitment must be founded on the needs of the organization and its members.
| Evaluating the Recruitment Processand the Lessons Learned |
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Recruitment Outcomes
To determine the success of the church-based recruitment strategy, it is informative to consider the recruitment process outcomes (i.e., the number of churches enrolled, the number of participants recruited, and the demographic range of the participants). However, in considering this, it is important to remain cognizant of the fact that churches and residents were selected using convenience samples, based on the advisory board's understanding of the community.
The Durham Elders Project originally intended to recruit 6 large churches into the study. However, in order to increase the sample's community representativeness, a decision was made to approach additional churches. Overall, the project successfully elicited the involvement of 10 local churches. There was an average of 17 participants per church, with a wide range of 1 to 45 participants.
The objective for recruitment of individuals into the study was 200 church members. However, the study recruited only 173 older African Americans parishioners. Largely, this discrepancy is not a product of the inability to recruit within churches, but a factor of timing. For a variety of logistical reasons, the project did not begin in a timely manner, and a decision was made not to continue recruitment into the holiday season to avoid interfering with the church members' holiday activities. Therefore, recruitment ended in early December, before sample size goals were met. The convenience sample from which data were gathered had an average age of 75, with 79% of respondents being female. For further details about the demographic characteristics of this population see Table 1.
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The project discovered that it is important for the community research advisory board to have effective leadership and ongoing management. With quarterly meetings of the board, there was a need to maintain enthusiasm and active participation on the part of the members. The board could only be successful if the members were able to freely exchange ideas. The collective exchange of ideas was required to develop a relationship with the older African American community by creating bridges between board members and community organizations. In doing so, a commitment to the project on the part of the board members grew, resulting in a collective community body, or community coalition, with a central mission of instigating a collaborative partnership between the research community and the older African American community.
Another challenge associated with the functioning of the community advisory board was achieving consensus on specific project goals, strategies, and targets (see Figure 1). For example, in order to be effective, it was essential that board members agree on the specific churches that would be involved and on the mechanisms for recruiting these churches. The project learned that having diverse composition of the board helped this process by providing entrée into various churches. This entrée emerged through board members' church affiliations and through board members acting as boundary spanners in developing ties between the Center and church pastors.
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The church is a major source of social involvement, providing social ties and a common sense of identity to its members, particularly among African American congregations (Hatch & Derthick, 1992; Scandrett, 1994). Therefore, incentives for participation had to maintain a balance between encouragement of participation and undue social pressure to participate. A financial incentive was chosen offering a $20 donation to the church in the name of each participant. The decision to make the donation to the church instead of the individuals was made through consultation between the researchers and the advisory board. It was intended to reduce direct coercion on the church members for participation by offering them money, and it also alleviated some of the logistical concerns of distributing money to each individual. With this system, the church had the option of using the donation for their funds or distributing it to the members. To address concerns of potential pressures resulting from the churches receiving incentives for higher participation, all meetings with pastors emphasized the importance of the individual's right to refuse involvement.
A need to maintain passive involvement on the part of the church in the recruitment process also posed a challenge associated with using the church as a point of access to the population. There is an existing institutional mandate from the Office for Protection From Research Risks requiring any organization actively involved in the recruitment of participants to possess its own Single Project Assurance (SPA) certification. With numerous churches in this study, securing such approval for each church would have proven extremely cumbersome. Therefore, steps were taken to assure only passive involvement on the part of the churches, while the project staff conducted active recruitment. As is always true, this exhibits the need for researchers to maintain a current understanding of the most recent guidelines concerning research with human subjects.
As previously described, numerous recruitment and data collection methods were used to allow flexibility for the churches. These ranged from the church allowing the project staff to make presentations and collect recruitment cards to churches having research days in which groups of members came to the church to participate in the study. In the individual strategies, through which members were contacted and interviewed wholly outside of church activities, the churches' level of involvement in recruitment was not a major concern. However, when the project conducted interviews in conjunction with an existing church activity or set up a research day, there was a need to closely monitor the churches' involvement. Therefore, all recruitment was in conjunction with presentations made at the church. For example, when interviews were conducted in conjunction with existing church activities (e.g., choir practice or church senior groups), recruitment took place during presentations by the research staff.
For church-approved research days, project staff worked with the church to coordinate the activity and its advertisement, inviting members to attend and participate in the study. Before conducting any interviews, participants were familiarized with a fact sheet describing the study, given an opportunity to decline, and completed a consent form, which was approved by the University of North Carolina School of Public Health Institutional Review Board.
Overcoming Survey Administration Challenges
Interviewers and investigators noted other challenges as well, in terms of the actual interview administration posing specific limitations. When interviews were conducted in the homes of individuals, there was a potential for distractions from the data collection and compromised privacy. On several occasions family members and friends were present in the home, endangering participant privacy and distracting both participant and interviewer from the survey. This acted as a limitation in part because of the length of the interview, which depending on the respondent ranged from 40 min to 1 h 15 min. Also, repeated phone calls had the potential to interrupt the survey for extended periods of time. In the participants' homes, interviewer comfort was also a concern. On occasion, interviewers held apprehensions about going into the neighborhood and entering the homes of these veritable strangers. To address these concerns, interviews were always scheduled during the daytime, and whenever possible, efforts were made to hold the interviews in a private, undisturbed area of the home.
However, although these challenges were present in respondent homes, this does not suggest that data collection via individuals brought to the church for the interview is preferred. Several challenges had to be addressed with this strategy as well. When individuals were interviewed in the churches, finding adequate space within the church facilities could be problematic and raised issues around maintaining privacy. To reduce invasions of privacy, interviewers attempted to find an unoccupied room in the church to conduct the interview. When this was not an option, efforts were taken to put an adequate amount of space between interview pairs. Challenges existed when conducting the interviews in conjunction with church activities as well. In these situations, there were often time constraints. Church members were not present at the church specifically to participate in research, but to participate in some other church activity. Thus, it was important not to distract them from their intended activity.
Interviewer Perceptions
To further consider what could be learned about the type of recruitment process and data collection used in the Durham Elders Project, the study interviewers answered a questionnaire containing both open- and closed-ended questions. The input of the interviewers in this process evaluation makes a significant contribution to our understanding of the success of the recruitment process. Although interviewers were not involved in the formative stages of developing community relationships, they were extensively trained on the project. The 1-week training session included sensitivity training on working with older adults and older minorities as well as detailed descriptions of the recruitment procedures. It was important that the interviewers be knowledgeable about these procedures so that they could answer any respondent questions. The interviewers were also trained to improve their interviewing skills and to recognize any problems during the interview process. Their involvement throughout the data collection process gave the interviewers a unique perspective on the differences in interview settings as well as the success of the consent process. Interviewers were asked to rate their level of agreement with a variety of statements relating to their perceptions of study components. These include their beliefs that the participants understood the purpose of the study and their feeling that the participants thought they were obligated to take part only because the pastor requested it.
The 10 primary interviewers completed the interviewer survey. One of the survey's findings particularly salient to recruitment procedures was the level of participant coercion perceived by the interviewers. Half of the interviewers "slightly agreed" that participants felt obligated to participate because it was their church. However, only 2 of the interviewers "slightly agreed" that respondents only participated because their pastor requested it. These findings are indicative of the need to incorporate recruitment strategies that maximize autonomy in an environment where potential respondents may feel social pressures to participate.
In addition to providing information regarding the potential pressure placed on participants, the interviewer survey also provided some insight into the effectiveness of the project's recruitment presentations in adequately informing the church members of the study. The majority of the interviewers (70%) either "slightly agreed" or "agreed" that participants did understand the consent form. However, 60% "disagreed" or "slightly disagreed" that respondents understood the purpose of the project before the interviewer's explanation. These findings indicate that the interviewers did not believe that presentations made to church members effectively explained the purpose of the study and requirements of participation. At the same time, this suggests that interviewers generally believed that through the informed consent procedure participants gained a full understanding of the project. A more thorough description of the study during introductory presentations may be warranted to increase the capacity of potential participants to make informed decisions.
The open-ended portion of the interviewer survey provided insight into two key aspects of using the church as a mechanism for recruiting older African Americans. Several of the interviewers directly commented on the skepticism of the participants and how coordinating the research through the churches may have reduced this skepticism. For example, one interviewer noted that
[Participants were] reluctant to disclose personal information (i.e., income) because they weren't sure how the information was going to be used.
Whereas another interviewer directly linked the alleviation of suspicion to the use of churches:
[One barrier was] suspicions of the interviewees ... suspicious about our motives; and had it not been for church encouragement for congregations to participate, we would have ended up with much fewer participants.
Such sentiments echo a common theme emerging from this process evaluation that explicit efforts should be taken to maintain autonomy among participants.
The interviewers also made several comments that speak to their perceptions of the utility of using the church as a mechanism for recruiting older African Americans. Interviewers described both positive and negative aspects. The following four quotes provide a progression from seeing the church as a meaningful and rich resource for accessing older African Americans to its potential for distorting the quality of the data.
I feel that the Black church is the center of the Black community.
I think that churches are the most convenient way of accessing Black elders, but it is definitely not sufficient ... not so diverse a sample.
Churchgoers tend to have a more optimistic outlook and a great deal of social support. This may have resulted in more favorable responses.
I feel the people who participated were among the "healthy elders."
These interviewers recognized an issue salient from a methodological perspective. Although using the church may be an easy and convenient way to access older African Americans, it is not necessarily tapping into the true diversity of the older African American community. Instead, it may merely be providing a sample of healthier, more optimistic older adults. Obviously missing those who may not go to church, it does not provide data representative of the population, especially for men and those who are frail. Caution should be used in drawing inferences from church-based surveys, in that they are statements about older African American churchgoers, which do not necessarily provide externally valid conclusions about the older African American population or community.
| Conclusions |
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In general, the individuals recruited for this study were a diverse group of older African Americans. Still, one obvious limitation is that even though a diverse sample was achieved, all of the participants held one common trait in that they were all people that participated in church activities. When such a procedure is used, the potential generalizability to the older African American population as a whole is suspect. Additionally, the recruitment strategy of approaching nonrandomly selected churches and recruiting members using convenience sampling creates the potential for a homogenous sample and clearly calls into question the external validity of any findings. It should be noted that generalizing to African American churchgoers might be problematic as well, in that those participating are likely to be those most active in the church. Thus, there may be a selection bias toward inclusion of the more involved members of the church. It is important to use caution in interpretation of results when using this type of sampling and recruitment strategy.
There are several areas in which this recruitment process was explicitly successful. The community research advisory board functioned effectively in reaching consensus on the use of churches as a portal of entry into the community. In addition, the board effectively identified potential churches and provided entrée into the community by introducing the Center and its project. This project was able to utilize the relationships developed between the Community Core, its advisory board, and the community churches to recruit both churches and individual church members to participate.
One ongoing challenge is to ensure that there are continual efforts to maintain the relationships developed between the Center and the community churches. It is important that investigators regard this procedure not simply as a mechanism for recruiting research participants but also as one in which a true partnership with the community develops. This partnership should, while providing a tool for research, also give back to the community and the churches in a positive and meaningful way. The Center consciously attempted to foster relationships by offering information discovered from the research as well as providing health education and information events suited to the interests of the churches and their members. For example, the Center developed and provided a forum on negotiating social security. The idea for the forum originated with the community advisory board and coincided with an initiative of the Social Security Administration. This represented the best of what could be accomplished when research, government initiative, and community action are in concert. Over 400 members of the community participated in the forum. This type of mutual interaction is a key component of nurturing the relationships with the community, as it is a way for the researchers to repay the community for its involvement in research projects.
There are several persistent questions concerning the use of churches as a mechanism for recruiting older African Americans into research projects. How can the research community address and alleviate skepticism among African Americans about their participation in research projects? This is particularly salient for older African Americans, who throughout their lives have experienced both implicit and explicit discrimination as well as exploitations by a largely White-dominated research community. In conjunction with the perceptions of exploitation by this population, there are also questions about the ethical implications of recruiting older African Americans in churches. Is it appropriate to use churches as a mechanism for research recruitment, and if so, how can participation be encouraged among members without compromising their autonomy? With the church functioning as a major source of social involvement among older African Americans, it is necessary to take all available steps to encourage church leaders and individual members to acknowledge and respect a right to refuse participation. One possible mechanism for doing so may be providing an extensive description of the project and a consent process that fully informs potential participants of the details of the study and their right to decline participation. In addition to compromising autonomy through research conducted in church settings, the potential exists for a lack of confidentiality with surveys containing sensitive questions taking place in one's own church. How can researchers and church members ensure privacy both during data collection and through the manner by which information is managed and disseminated?
Finally, the global question arises of how well a church-based approach to recruiting older African Americans adequately taps into the heterogeneity of the African American community. For example, it is entirely possible that through church-based approaches, there are at least three groups of older African Americans that will be underrepresented: men, those who are less healthy members of the community, and individuals who do not attend a church. It is important to recognize that research samples exclusively recruited from churches may not fully represent an older African American community. Because of the convenience of developing research relationships with churches, and the relative difficulty of reaching those older African Americans who are not active in a church community, such strategies as this may be a reasonable place to start in recruiting older African Americans for research. However, it is neither exhaustive nor sufficient. The need now exists to begin moving beyond faith-based organizations as a means of recruitment in order to gain greater access to the older African American community as a whole. Such capacity is required if we are to achieve a true understanding of social and health phenomena among this group of people, incorporating the diverse nature and complexities of these phenomena.
Overall, this article is not intended to be a comprehensive or rigorous evaluation either of recruiting older African Americans to participate in research or of using a church-based approach for such recruitment. Instead, it is a description of the process used in a single project and of the successes and challenges observationally discovered through its conduct. This article highlights several distinct challenges associated with the recruitment process used by the Durham Elders Project and elucidates some remaining questions and areas of concern. The task of effectively recruiting representative samples of older African Americans into research projects in a way that is both culturally appropriate and beneficial to the community remains. Still, a strategy of coordinating a community research advisory board to incorporate the views of community members and to drive a church-based recruitment procedure provides a starting point for reaching an immensely important segment of society historically ignored by the research community.
| Footnotes |
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This research was supported by a research grant from the National Institute on Aging, the National Institute of Nursing Research, and the Office of Research on Minority Health (RO1 NR 04716). We acknowledge the contributions of Shane Diekman, MPH, Robert DeVellis, PhD, and Anthony Gachie. ![]()
1Center on Minority Aging, Institute on Aging, School of Public Health, University of North Carolina at Chapel Hill. ![]()
2Department of Public Health Sciences, Wake Forest University School of Medicine, Winston-Salem, NC. ![]()
3Department of Health Education, North Carolina Central University, Durham, NC. ![]()
Received for publication December 31, 2001. Accepted for publication June 14, 2002.
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