THIS ARTICLE provides insights for researchers, based on the author's experience as a researcher and program interventionist, as they prepare to develop research in minority communities, particularly those that are African American. It is hoped that these insights will encourage more community-based participatory research (CBPR). The project described here was designed to increase the numbers of African American women screened for breast cancer in Texas, especially those who are poor and underserved. It was very successful. Between 1998 and 2003, more than 114,000 people received cancer information and education and 8,459 African American women who had contact with the project were screened. Another major accomplishment was more than 17,000 hours of service by community volunteers. Several lessons came from these experiences1 that are pertinent to engaging communities in CBPR and illustrate the guiding principles as outlined by Israel and colleagues.2
BACKGROUND TO THE PROJECT
African American women and breast cancer screening
African American women bear a disproportionate burden of breast cancer mortality.3 Although the incidence rate for breast cancer is about 17% lower in African American women than in White women, the mortality rate is 32% higher.3 Moreover, the survival rate for breast cancer in African American women is 75%, compared with 89% among White women. Mammography screening reduces breast cancer mortality by 35% to 50%.3 Although the reported percentages of White and African American women, aged 40 years and older, who received mammograms in the last 2 years were both 70%, only 54% of African American women nationwide reported having had a mammogram within the past year in accordance with American Cancer Society guidelines.4 In other words, mammogram frequency for White women was higher than for African American women. The American Cancer Society further reports that of all the breast cancers diagnosed among African American women, 53% are diagnosed at a localized stage, compared with 64% among White women.4 These disparities reflect shortcomings of cancer control for African American women.
Several factors constrain the use of mammography screening by African American women, including individual, organizational, sociocultural, and interpersonal reasons.5-7 For all women, regardless of race, the use of mammography has been related to knowledge about cancer and mammography,8-11 access to a usual source of care,12 and beliefs about the likelihood of having breast cancer and the value of regular screening.13 Champion and Scott14 found that perceived barriers, referral for a mammogram from a healthcare provider, recent thoughts about mammography, and having a regular physician are variables that significantly predicted mammography use among 329 African American women 45 to 64 years of age. Phillips et al15 found that African American women hold misconceptions about the etiology of breast cancer and fatalistic perspectives on breast cancer outcomes. Adams et al16 identified the fear of finding cancer as the primary reason African American women do not get mammograms. Rawl et al17 indicated that tailored interventions provided a promising strategy for increasing mammography use among African American women. Although the parameters of interventions at the individual level have been identified,18-21 questions remain as to how to involve communities in defining the research to develop comprehensive effective interventions.
One way of reducing cancer control disparities is by expanding access to healthcare in underserved areas by mobilizing these communities to develop and maintain screening programs for themselves as well as involving these groups in the research necessary for their development. Healthy People 201022 acknowledged the important role of including input from communities in promoting health, stressing that communities that work toward improving the health of specific at-risk groups are more likely to be successful when individuals collaborate within their communities. Many researchers23-26 have recognized that a significant opportunity for improving cancer control lies in building the capacity within communities to promote behaviors that have been shown either to prevent cancer or to allow for its early detection and treatment.27 Capacity-building requires that communities first understand the importance of early detection and do a needs assessment of the assets of the community and the colearning between researchers and community members that allows for transfer of skills and knowledge. Researchers understand the research process, and community members can provide expertise on how a particular community works and what the community deems important.
Minkler and Wallerstein27 emphasize enhancing the capacity of partners to learn from and work with each other. It is necessary to get community input about what people in the community perceive to be the problems, causes, and solutions to these problems. However, members of African American communities are seldom invited to participate as partners in the research activities in their communities.
Community-based participatory research
CBPR facilitates communities' and researchers' working together for improved health outcomes.2 In this partnership, community members, organizational representatives, and researchers are equitably involved in all aspects of the research process. The participatory aspect of the research prevents it from becoming merely research that is "community placed." Partnering entails sharing resources with community entities to enable their participation. CBPR emphasizes the inclusion of the affected community in all aspects of the research process, from definition of the problem to research design, data collection, analysis, interpretation, and dissemination of findings.
Israel and colleagues2 posit that CBPR is a paradigm, a philosophy to problem solving that unites key players-the researcher and the community members. It provides the researcher with a means to become acquainted with norms and attitudes of the community and allows the researcher to share his or her knowledge with the community. Israel et al2 present 8 guiding principles of CBPR essential for a meaningful CBPR project; these are presented in Table 1.
THE AABCO PROJECT
Overview of the project
During a 5-year campaign to raise breast cancer awareness and the importance of early detection among African American women in Texas, a culturally sensitive, community-based model for outreach and case management was developed. The Texas Cancer Council, a state cancer control agency, funded the project entitled "Community-Based Model for Enhancing African American Women's Breast Cancer Screening Outreach and Case Management Services in Texas (AABCO)."2,28 Project goals included developing, implementing, and evaluating a culturally sensitive, community-based model for coordinated outreach and case management to enhance African American women's participation in early detection and follow-up services for breast cancer in 3 communities in Texas. The communities, 2 urban and 1 rural, were chosen as 70% of all breast cancers identified in African American women in the state of Texas are found in Dallas, Houston, and Tyler, Texas. They were also chosen to determine whether differences existed among them in the response to outreach activities. AABCO's objectives are outlined in Table 2.
Primary funding came from the Texas Cancer Council, and the intervention was housed in central Texas at The University of Texas at Austin School of Nursing. Subcontracts were negotiated for AABCO's sites in the 3 cities with the Department of State Health Services Breast and Cervical Cancer Control Programs. Partners were the Parkland Health & Hospital System in Dallas, the Harris County Hospital District in Houston, and the University of Texas Health Science Center at Tyler and the Lake County Area Health Education Center in Tyler. Although these partners may not look like community partners at first glance, each provided local administrative channels for the funding that was used to hire local outreach coordinators. Each one also ran a satellite clinic in these communities that provided space and infrastructure for AABCO activities.
The project utilized a culturally sensitive, community-based model, also known as the AABCO logic model (Figure 1) for outreach and case management. The model was primarily developed by the project director, though it had also been informed by discussions with academic colleagues and relationships with members of the community who later became AABCO partners. The AABCO logic model represents underlying assumptions, project activities, and anticipated outcomes. This model played an instrumental role in directing the efforts of project personnel. Guided by the model, evaluation activities provided an understanding of how various activities contributed to the achievement of AABCO's objectives.
Application of guiding principles
AABCO activities were designed around 3 core components: (1) utilization of outreach coordinators, (2) development of site community and professional advisory committees, and (3) development of health-based coalitions to promote education and awareness within the 3 communities. Although they were based on Israel et al's principles for CBPR, they were implemented and adapted according to each community's circumstances.
The application of these principles in real settings led to some powerful lessons learned, the first of which was to develop relationships that will foster mutual collegiality and respect with the communities in which the researchers wish to work. (Other lessons learned will appear in italics in the text that follows.) This is especially true when researchers do not look like the people with whom they plan to do research. We may tend to think that respect is a quality of interpersonal encounters, but it also takes the form of economic equity. The AABCO project put this principle into practice by hiring outreach coordinators from the community, paying adequate salaries, and treating them as professionals. The outreach coordinators were included as part of the decision-making team regarding any protocol changes; frequently, they were the ones who suggested activities for recruiting women for screening.
AABCO instantiated the principle of "building on the strengths and resources of the community" by, first of all, holding weekly telephone meetings between the project director and the community outreach coordinators in order to discuss the project's regular outreach activities. One of the first outreach activities was a needs assessment to collect information about the communities' capacity to deliver breast health messages as well as obtain information on gaps in the accessibility of services. Part of the needs assessment involved the development of a checklist to determine what barriers to mammography were perceived by the women in the 3 communities.1 Coordinators helped refine the final questionnaire with feedback from women in focus groups. One hundred sixty women from the 3 different locations completed the 23-item survey. These women rated "worry the breast X-ray might find cancer" as the biggest barrier to mammography screening.
AABCO had other ways to employ the principles of "integrating knowledge and action for the benefit of all partners" and "promoting a colearning and empowering process." Outreach coordinators conducted focus groups in the 1st and 2nd years to determine the most effective ways to encourage these African American women to have mammography screenings. Working with an advertising firm, the outreach coordinators and the project director tested the appeal of various breast cancer screening messages. Information from the coordinator-led focus groups taught AABCO the power of the family message, "Get screened for your family who love and need you," tapping underlying emotions that should not be ignored when working with African American women.
Producing culturally resonant messages would not have been possible without recognizing the multifaceted diversity within a community and utilizing culturally competent models that reflect cultural awareness, cultural knowledge, cultural skill, and the cultural encounter.28,29Cultural knowledge facilitates an understanding of the beliefs, values, and lifestyles of other groups, recognizing that these may differ from the researcher's perspective. Cultural skill requires the use of a cultural assessment to determine the beliefs and values and way of life of the people in the community when developing a research plan or intervention for diverse populations. The cultural encounter is working directly with the diverse population to refine knowledge and skills. Gaining entry into the community requires taking time to explore the community, determining who the formal and informal leaders are that can be approached to partner for research. This can be done in one of several ways. Some of this information may be gleaned from the major daily newspapers as well as smaller neighborhood newspapers, including various ethnic papers. The researcher will also need to take the time to make multiple visits to the community, talking with local leaders, eating at local restaurants, attending local events, and otherwise becoming familiar with the community's way of life.
This led to another lesson learned in the process of implementing AABCO: To successfully promote health in the African American community, it is necessary to recognize that the community consists of individuals and groups who have different or multiple cultural identities. There are variations along the dimensions of spirituality,28 homogeneity, affect, communalism, oral tradition, and social time perspective in the way people identify culturally in the African American community. Often researchers do not acknowledge the differences in health beliefs and health-related behaviors among African American communities, believing that all the persons within a community believe and behave in similar ways. For example, religion and spirituality play a central role; it is estimated that as many as 72% of African Americans are members of a church. Kinney et al30 report on studies that illustrate how African Americans use their religious beliefs and practices to cope with and reduce illness-related psychological distress.
However, simply understanding community heterogeneity does not ensure opportunities for CBPR, because cultural awareness requires one to also become aware of one's own biases and prejudices toward cultural groups different from one's own. Examination of one's own prejudices toward the target group and a willingness to suspend judgments, and learning about what the people really are like instead of how one thinks they might be, are essential for developing knowledge about a community.
More important, to engage the principles of "recognizing the community as a unit of identity" and "facilitating collaborative partnerships in all phases of the research," a researcher will need to become well known before research begins. If the researcher has a personal relationship with someone, or works with a colleague from the target group, asking for introductions to informal and formal leaders can provide an entree. We learned that researchers from academic institutions are very often considered outsiders and need to be seen as trustworthy and reliable in the eyes of the local community. To accomplish this, researchers need to establish themselves within the community as sincere in his or her concerns about the community. One might, for instance, offer to help with a local project of interest.
As a researcher interested in cancer control, the author learned how breast cancer screening services were typically delivered to these communities, and she became familiar with the communities themselves, building trust by gaining the support and insight of community leaders. Although the author is African American herself, a rapport with the community was not automatic and required conscious effort and work. She attended several functions at community centers and churches and also participated in local radio programs discussing health-promotion issues and breast cancer screening. Her presence in the community also encouraged women who had never been involved in volunteer activities and or health-promotion activities to do so. Moreover, the author looked to friends with whom she had worked on other cancer control efforts and who had contacts in the 3 communities to help identify persons who might become outreach coordinators for the project, further helping the author gain entree into the communities.
However, another lesson learned was to make other people known to the community, not just the principal researcher, the public face of the project. Colleagues, friends, and outreach coordinators also served on the overall project advisory board, which met quarterly for the 5 years of the project to coordinate, plan, and support the building of the project infrastructure. Their primary role was to serve as advocates for AABCO through their spheres of influence; this activity helped to garner broad community support. Some members of the board were members of the Texas Cancer Council, the American Cancer Society, the Susan G. Komen Foundation, the Texas Department of State Health Services Breast and Cervical Cancer Control Program, and representatives from selected sites. Thus, the project provided status and social capital to community members that they might not have had access to otherwise, and it leveraged existing social capital for the benefit of the community.
After several meetings with each site's personnel, it became clear that volunteers would be needed to assist the outreach coordinators with project activities and to help create new outreach strategies. At an advisory board meeting, members realized that they needed a new way to motivate and reward volunteers. They decided to provide volunteers with incentives at the beginning of their service rather than as a reward after the project activities were completed. In this way, the burden of trust fell on the project (which could absorb the effects of individuals who did not fulfill their obligations), not on the participants (who might all feel disrespected if they did not receive the incentives they had waited for). Providing the incentives in this manner helped to foster feelings of pride and ownership in the project by the volunteers. As a result, AABCO was able to mobilize more than 17,000 hours of volunteer time. This is significant because it shows the amount of potential commitment to solving local problems that exists in these communities. The principle of "building on the strengths and resources of the community" is often stated, but people may not realize the extent to which potential energy has rarely been tapped, or that many women have never previously been asked to volunteer. The mobilization of volunteer resources for community projects shows that people possess significant interest in problem solving that needs to be utilized and recognized. As other authors of articles included in this journal have also argued, the best ways to solve community problems often use local resources.31-33
To galvanize the community around breast cancer screening issues effectively, community coalitions were also developed. Outreach coordinators began advertising the need for breast cancer awareness volunteers, beginning with recruiting their own friends and other persons to serve on the local coalitions. Being coalition members themselves, the outreach coordinators, as liaisons between the community and AABCO, were able to get additional community-based volunteers.
During the first year of AABCO, the Dallas outreach coordinator developed a team-building program to recruit volunteers that would embody the principle of "promoting a colearning and empowering process." The program entitled "SOV" (which stood for "survivors, outreach, and volunteers") enlisted the aid of African American women to tell their stories of surviving breast cancer. It also enlisted women who had not had cancer, both professional and nonprofessional, to become volunteers. These women who were recruited from various walks of life helped to develop strategies to increase breast health awareness. The setting was a 3-hour bus trip to San Antonio from Dallas, with a stop at an outlet mall so that women could engage in a favorite pastime: shopping. During the first year, 100 African American women were invited on the trip, and after the purpose of the trip (to recruit and train volunteers in this breast health awareness program) was explained to them, 50 accepted. The Dallas County Komen Affiliate Race for the Cure Committee provided complimentary lunch. A commitment of 50 hours of service toward AABCO's outreach efforts was requested from each woman. Utilizing a "captive audience" approach to provide training for the SOV participants, volunteers received training from professional health educators and an overview of the AABCO project and other local outreach organizations while on the bus. At the end of the day, each of the 50 volunteers signed a contract for a 50-hour volunteer service commitment for volunteer service. In subsequent years, AABCO held these 3-hour trips for women in Houston and Tyler. In addition to lunches provided by local organizations, the women received T-shirts with the SOV and AABCO logos. When the bus stopped at rest stops, there were many inquiries from people asking about the group and its mission. Many of the volunteers were very proud of the work and of the recognition they received.
The volunteers had many roles within the project. The outreach coordinators provided education/awareness activities for the volunteers to help them recruit women to screening sites. Interested members of the community, church and civic leaders, and members of the medical professions were invited to meetings to discuss the issues surrounding breast cancer. The author visited with each group and held several sessions to present on the subject and to ask for support and the development of resources.
In developing broad-based coalitions, it became apparent that members of the community were not affiliated with other cancer control agencies and needed support and assistance to join them. The author assisted and encouraged the outreach coordinators and some project volunteers to become members of committees and boards of local cancer control agencies (for instance, a local unit of the American Cancer Society and the local affiliate of the Susan G. Komen Foundation). Building relationships with these organizations provided important perspectives on the challenges in reaching the target population. Information was added to the outreach coordinators' body of knowledge when they participated in these endeavors, and, in turn, the coordinators found ways to infuse cultural sensitivity into these organizations. These agencies were a great help in providing resources into the target community. This was especially important when it was observed that there were no local community member volunteers that looked like the people from the communities in these agencies. This allowed members of the community to be included in cancer control efforts of these organizations and convey to them what the needs of their communities were and how they could be met. This then became another lesson learned, as nothing will help a researcher engage the community and get involvement as much as showing support and assisting community members to gain access to other organizations that can be of benefit to the community for community endeavors. Once people connect with the researcher's organization and recognize that the researcher is committed to them, they will begin to turn to the researcher for help in developing research programs to solve other healthcare issues.
CONCLUSION
The principles underlying AABCO can be used in other communities, but there is one principle that should be kept in mind by researchers undertaking CBPR for the first time: As Israel et al note, "no one set of community based participatory research principles is applicable for all partnerships."34(p59) It may be as tempting to apply principles that were successful in AABCO to other communities as it is to presuppose that we exhausted all of the possible lessons to be learned. Another 5 years might have led to other refinements and lessons learned. What seems most important, however, is that AABCO left behind social networks, invigorated volunteers, and renewed attitudes so that community insiders can continue cancer control work. At the very least, AABCO introduced women to large healthcare systems, and its intervention helped them navigate those systems in order to provide for care.
REFERENCES