Latina recruitment for cancer prevention education via Community Based Participatory Research strategies
Introduction
Increasing minority participation in cancer research has been cited as an ethical and statistical necessity for gaining population-specific knowledge of cancer prevention, screening, and treatment [1], [2]; yet, locating and recruiting eligible and willing participants presents unique structural and cultural/linguistic challenges [3], [4], [5]. We focus on the specific challenge of recruiting and engaging Latina women in cancer prevention education research, and present community-based strategies used to recruit women into a recently completed study in Arizona, Juntos en la Salud (Together in Health). We suggest that these strategies resulted in enrollment of an especially low-income, underinsured population. To evidence this, we present data comparing demographic and screening profiles of enrollees to the general population of Latinos in Arizona.
Various studies underscore the difficulty of recruiting Latinos for cancer prevention education and intervention. Although growing numbers of Latinos are participating in cancer prevention and treatment trials, participation remains lower than the proportion expected based on percentage of the total population [6], [7]. For instance, Latinos accounted for just 2–3% of the total participants in the National Surgical Adjuvant Breast and Bowel Project's Breast Cancer Prevention Trial [8] and 3% of participants in the Southwest Oncology Group's Prostate Cancer Prevention Trial [9].
Latinos have fewer resources and exposures to recruitment opportunities that might facilitate enrollment, principally healthcare access and socioeconomic issues. For instance, many, especially new immigrants in the Southwestern U.S., work for very low wages, but fall into the “notch” group (i.e. people who make too much money to qualify for welfare coverage, and thus must pay out-of-pocket for health care), and consequently rarely use healthcare. Because most invitations to participate in research occur in clinical settings, underutilization of services limits clinical trial opportunities. Lack of transportation, need for childcare, lack of sick leave from work, scarcity of evening health care services, and competing family responsibilities are only a few of many structural limitations to healthcare use and participation in studies [10], [11], [12].
Compounding these major structural barriers, recruitment among this population is made more difficult by the disconnect between researchers and community members [13]. Factors modifiable in recruitment, and even in the design and implementation of studies, are important to address, including strategies that build trusting relationships in the community and adapting messages to the culture [14]. Factors most often reported as contributing to poor participation include violation of cultural norms such as personalismo, familismo, and respeto. It has been shown that respect and trust are important to building a personalized relationship [15], [16], and are necessary for positive responses to referrals [17]. Moreover, the lower value and priority placed on clinical trials by Latino physicians [18] is a likely contributor to fewer referrals in this population. Finally, language barriers in patient–provider communication reduce the likelihood that Latinos preferring Spanish over English receive high quality care [12]. These barriers effectively reduce Latino participation in clinical trials.
In our recently completed study, we adopted the tenets of Community Based Participatory Research (CBPR) to address recruitment challenges arising from the schism between researchers and community. According to the Agency for Healthcare Research and Quality, CBPR is a collaborative process of research involving researchers and community representatives [19]. In the process and products of research, it:
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engages community members,
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employs local knowledge and culture in the understanding of health problems and the design of interventions, and
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invests community members in the research, and ultimately in the reduction of health disparities.
Advantages of CBPR for the marginalized population include a better fit of programs to the target community (naturalistically expressing cultural values and norms), outcomes that are consistent with community-identified needs, and perceived quality and acceptance that lead to greater benefits. Advantages of CBPR for researchers include enhanced recruitment to studies and greater external validity of results.
In this paper, we describe the use of CBPR principles in a cancer prevention education research project, and how these methods impacted the recruitment of and engagement with a very hard-to-reach cohort of low-income, underserved Latina women. Specifically, we describe those CBPR-based recruitment strategies that we found supported enrollment. We then support the claim that we recruited a particularly underserved population by characterizing the participants we reached, and contrasting them with the general Latino population in Arizona.
The research project, Juntos en la Salud (Together in Health), was a randomized, controlled community trial conducted through the University of Arizona Cancer Center between January 2003 and December 2007. The American Cancer Society (ACS) awarded funding based on the investigators' and staff's strong previous grounding in the Latino community, as well as the plans for community involvement in the study implementation. The purpose of the study was to test the effects on participants' behavior of two different, theory-based methods of implementing a promotora-led cancer prevention/screening curriculum. Recruitment was conducted in the Phoenix, Arizona, metropolitan area. Latina women aged 18 and older were eligible to participate if they were due (based on American Cancer Society age-appropriate screening guidelines) for cervical, breast, or colorectal cancer screening.
Both intervention methods were delivered by promotoras de salud (Latina community health educators, see below), but with significant differences between the two arms of study. An individual, face-to-face intervention that included all aspects of the natural-helper and culturally-aligned teaching style that promotoras provide was compared to a promotora-led group intervention that emphasized participant interaction and social support (expected to endure beyond the term of the intervention). Both interventions used culturally-aligned, English and Spanish materials (written and videos) promoting screening messages (breast, cervical, and colon) and primary cancer prevention messages (diet, smoking, and physical activity). The cultural congruence of the program was built less upon including content incorporating pre-identified cultural values, but more upon building the curriculum and recruitment strategies informed directly by members of the culture, including promotoras and the advisory board. The intervention was delivered in seven sessions regardless of arm of study.
The primary outcome of the study is participant screening for any one procedure that was due at baseline; secondary outcomes include dietary and physical activity changes post-intervention. Participants received informed consent in the language of their choice, both in writing and via verbal discussion. Baseline interviews were conducted after the consenting procedure, and the same panel of questions were asked post-intervention. Data (including demographic data presented below) were collected in face-to-face interviews conducted by survey interviewers who were blinded to arm of study. All Juntos staff members were thoroughly trained in HIPAA and the Rochester Human Subjects Protection certifications.
Results from this study are still being compiled for later reporting. Our purpose in this report on recruitment is to focus on the intentional incorporation of CBPR methods in all phases of program development and recruitment, rather than the behavioral outcomes of the Juntos interventional study.
The CBPR process involves close communication between researchers and community representatives in every aspect of the research, from the conceptualization of specific aims, to the development of interventions, materials, measures and methods of data collection, to name a few. CBPR-congruent strategies to create such interaction are to work with “…paraprofessionals, informal community leaders, ethnic or folk healers, promotoras de salud, and other community health workers in health promotion and disease prevention programming for underserved communities” [20].
Promotoras are members of their own communities who serve as health program recruiters and educators, using their natural ability to reach others with culturally sensitive approaches, tailoring their methods and messages to meet the special needs of their network of friends and neighbors [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31]. Further, promotoras are more knowledgeable about community resources; they are seen as credible within their own communities; they are able to reach isolated, high risk individuals; and they have a vested interest in addressing local health and social issues, thus providing more integrated support than might outsiders [32], [33]. It is this inherent cultural understanding and the face-to-face flexibility brought by the promotoras that allow them to promote health messages in ways that parallel the cultural norms. Specifically related to recruitment, promotoras are likely more able to reach a wide network of individuals in their communities, promoting innovative ideas and behaviors that fit cultural needs and expectations [34], [35], [36], [37], a strategy that may be particularly effective to reach Latinos [25]. In our study, promotoras filled these roles, which became critical to the community-based implementation.
While promotoras diffuse cultural knowledge and access community connections on a daily basis, advisory boards work in a more concentrated manner to provide a voice for the community. We established a Hispanic community advisory board in the formative stages of the project to establish community connection and leadership in the program. At each step of the way, the Hispanic Advisory Board (HAB) assembled to support our project, contributing ideas and guidance, linkages and access to the community. Promotora and HAB involvement are addressed throughout the subsequent discussion of CBPR factors contributing to enrollment of a truly underserved population, detailing their contributions through the steps.
Section snippets
Methods
The CBPR-based recruitment strategies we used underscore several aspects of CBPR: a) community involvement in networking and recruitment of sites and b) participants, c) community involvement in project development and, as the program progressed, d) community feedback. (These areas of community involvement are interwoven; separating them into sections is simply a heuristic device to facilitate presentation.)
Site recruitment results
The preliminary list of 42 recruitment sites included elementary and middle schools, churches attended by Juntos promotoras, family resource centers, and social service agencies. During the years of recruitment, through continuously asking current contacts to recommend new sites, the site list grew to 110 sites and expanded to include senior centers, Head Start groups, health fairs, circles of friends who met at homes, trailer parks, and apartment complexes. Twenty of these sites participated
Discussion
Recruitment of 110 sites, some yielding multiple groups of women eager to join our study, produced more than the goal of 144 randomized groups. A combination of existing social networks among Promotoras and HAB members, and continued efforts to identify new and unique places to recruit, produced a rich recruitment base. Even after the end of the recruitment period, several of our participating sites continued to ask for classes to continue or to make recommendations for other sites to tap. It
Conclusion
CBPR methods were applied to recruit and engage a large population of Latinos in our cancer prevention and screening study. Promotoras and an advisory board of local lay community members, professionals, and leaders played central roles in building upon established relationships and expanding the network of contacts for recruitment of sites and participants, and helped develop and modify the program to assure community and cultural fit.
The use of CBPR in program design and implementation is as
Acknowledgements
We wish to thank the promotoras de salud (Latina community health advisors) and interviewers for their contributions to all aspects of this project. The study was funded by the American Cancer Society, Juntos en la Salud: Cancer Prevention and Screening for Latinas #TURSG-03-080-01-PBP.
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