Community-based participatory research (CBPR) initiatives such as the National Cancer Institute’s Community Networks Program (CNP) (2005–2010) often emphasize training of junior investigators from underrepresented backgrounds to address health disparities. From July to October 2010, a convenience sample of 80 participants from the 25 CNP national sites completed our 45-item, web-based survey on the training and mentoring of junior investigators. This study assessed the academic productivity and CBPR-related experiences of the CNP junior investigators (n=37). Those from underrepresented backgrounds reported giving more presentations in non-academic settings (9 vs. 4 in last 5 years, p=0.01), having more co-authored publications (8 vs. 3 in last 5 years, p=0.01), and spending more time on CBPR-related activities than their non-underrepresented counterparts. Regardless of background, junior investigators shared similar levels of satisfaction with their mentors and CBPR experiences. This study provides support for the success of the CNP’s training program, especially effort directed at underrepresented investigators.
The Long Island Breast Cancer Study Project was the first federally funded study of environmental causes of breast cancer. Although advocates were expected to participate in this study, the details of their participation were not adequately clarified in project guidelines, which resulted in confusion over their role in the project. The Breast Cancer and Environment Research Centers (BCERCs) are funded by the National Institute of Environmental Health Sciences and the National Cancer Institute; these centers continue to conduct research into environmental links to breast cancer and to clarify advocate–scientist guidelines for collaboration.
Practitioners in community-based participatory research (CBPR) are grappling with how to improve CBPR projects for all groups involved in breast cancer and environmental studies. The ever-growing body of literature on CBPR elaborates on a number of factors that make CBPR particularly challenging, specifically regarding partnerships between advocate and scientific communities. This study draws on CBPR principles to evaluate advocate–scientist collaboration in the BCERCs.
We conducted surveys at BCERC annual meetings in 2005 and 2007 and 11 in-depth open-ended interviews with key stakeholders such as primary investigators within the centers to assess the perceptions of the advocates and scientists regarding collaboration between advocates and scientists who were engaged in CBPR studies.
We found that although participatory guidelines were a focus of BCERCs, underlying differences between advocates and scientists with regard to paradigms of scientific inquiry, priorities, and desired outcomes need to be addressed for more effective collaboration to take place.
Our findings contribute to the broader CBPR literature by highlighting the role of underlying assumptions that may hinder the collaborative process and suggest the need for continued assessment research into participatory research projects on breast cancer and the environment.
collaborative research; community-based participatory research; environmental breast cancer research
National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.
Community-based participatory research; Ethical dilemmas; Ethical issues in CBPR; Research ethics; Vulnerable communities
Recognizing the need to overcome the obstacles of traditional university- and discipline-oriented research approaches, a variety of incentives to promote community-based participatory research (CBPR) are presented. Experiences of existing CBPR researchers are used in outlining how this methodological approach can appeal to faculty: the common ground shared by faculty and community leaders in challenging the status quo; opportunities to have an impact on local, regional, and national policy; and opening doors for new research and funding opportunities. Strategies for promoting CBPR in universities are provided in getting CBPR started, changing institutional practices currently inhibiting CBPR, and institutionalizing CBPR. Among the specific strategies are: development of faculty research networks; team approaches to CBPR; mentoring faculty and students; using existing national CBPR networks; modifying tenure and promotion guidelines; development of appropriate measures of CBPR scholarship; earmarking university resources to support CBPR; using Institutional Review Boards to promote CBPR; making CBPR-oriented faculty appointments; and creating CBPR centers.
community-based participatory research; collaborative research; policy research; evaluation research; faculty development
Community-based participatory research (CBPR) has been widely used in public health research in the last decade as an approach to develop culturally centered interventions and collaborative research processes in which communities are directly involved in the construction and implementation of these interventions and in other application of findings. Little is known, however, about CBPR pathways of change and how these academic–community collaborations may contribute to successful outcomes. A new health CBPR conceptual model (Wallerstein N, Oetzel JG, Duran B et al. CBPR: What predicts outcomes? In: Minkler M, Wallerstein N (eds). Communication Based Participatory Research, 2nd edn. San Francisco, CA: John Wiley & Co., 2008) suggests that relationships between four components: context, group dynamics, the extent of community-centeredness in intervention and/or research design and the impact of these participatory processes on CBPR system change and health outcomes. This article seeks to identify instruments and measures in a comprehensive literature review that relates to these distinct components of the CBPR model and to present them in an organized and indexed format for researcher use. Specifically, 258 articles were identified in a review of CBPR (and related) literature from 2002 to 2008. Based on this review and from recommendations of a national advisory board, 46 CBPR instruments were identified and each was reviewed and coded using the CBPR logic model. The 46 instruments yielded 224 individual measures of characteristics in the CBPR model. While this study does not investigate the quality of the instruments, it does provide information about reliability and validity for specific measures. Group dynamics proved to have the largest number of identified measures, while context and CBPR system and health outcomes had the least. Consistent with other summaries of instruments, such as Granner and Sharpe’s inventory (Granner ML, Sharpe PA. Evaluating community coalition characteristics and functioning: a summary of measurement tools. Health Educ Res 2004; 19: 514–32), validity and reliability information were often lacking, and one or both were only available for 65 of the 224 measures. This summary of measures provides a place to start for new and continuing partnerships seeking to evaluate their progress.
Disproportionate and persistent inequities in quality of healthcare have been observed among persons of color in the United States. To understand and ultimately eliminate such inequities, several public health institutions have issued calls for innovative methods and approaches that examine determinants from the social, organizational and public policy contexts to inform the design of systems change interventions. The authors, including academic and community research partners in a community-based participatory research (CBPR) study, reflected together on the use and value of the critical incident technique (CIT) for exploring racial disparities in healthcare for women with breast cancer. Academic and community partners used initial large group discussion involving a large partnership of 35 academic and community researchers guided by principles of CBPR, followed by the efforts of a smaller interdisciplinary manuscript team of academic and community researchers to reflect, document summarize and translate this participatory research process, lessons learned and value added from using the CIT with principles of CBPR and Undoing Racism. The finding of this article is a discussion of the process, strengths and challenges of utilizing CIT with CBPR. The participation of community members at all levels of the research process including development, collection of the data and analysis of the data was enhanced by the CIT process. As the field of CBPR continues to mature, innovative processes which combine the expertise of community and academic partners can enhance the success of such partnerships. This report contributes to existing literature by illustrating a unique and participatory research application of CIT with principles of CBPR and Undoing Racism. Findings highlight the collaborative process used to identify and implement this novel method and the adaptability of this technique in the interdisciplinary exploration of system-level changes to understand and address disparities in breast cancer and cancer care.
With growing interest in the CBPR approach to cancer health disparities research, mechanisms are needed to support adherence to its principles. The Carolina Community Network (CCN), 1 of 25 Community Network Programs funded by the National Cancer Institute (NCI), developed a model for providing funds to community-based organizations.
This paper presents the rationale and structure of a Community Grants Program (CGP) model, describes the steps taken to implement the program, and discusses the lessons learned and recommendations for using the grants model for CBPR.
Three types of projects—cancer education, implementation of an evidence-based intervention, and the development of community–academic research partnerships—could be supported by a community grant. The CGP consists of four phases: Pre-award, peer-review process, post-award, and project implementation.
The CGP serves as a catalyst for developing and maintaining community–academic partnerships through its incorporation of CBPR principles.
Providing small grants to community-based organizations can identify organizations to serve as community research partners, fostering the CBPR approach in the development of community–academic partnerships by sharing resources and building capacity.
NCI’s Community Networks Program; cancer health disparities; community-based participatory research; community–academic research partnerships; microgrants
We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a community-based participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research.
We draw on our experiences guiding a multi-partner CBPR project through university and state Institutional Review Board reviews, and other CBPR colleagues' written accounts and conference presentations and discussions. We also interviewed academics involved in CBPR to learn of their challenges with Institutional Review Boards.
We found that Institutional Review Boards are generally unfamiliar with CBPR, reluctant to oversee community partners, and resistant to ongoing researcher-participant interaction. Institutional Review Boards sometimes unintentionally violate the very principles of beneficence and justice which they are supposed to uphold. For example, some Institutional Review Boards refuse to allow report-back of individual data to participants, which contradicts the CBPR principles that guide a growing number of projects. This causes significant delays and may divert research and dissemination efforts. Our extensive education of our university Institutional Review Board convinced them to provide human subjects protection coverage for two community-based organizations in our partnership.
IRBs and funders should develop clear, routine review guidelines that respect the unique qualities of CBPR, while researchers and community partners can educate IRB staff and board members about the objectives, ethical frameworks, and research methods of CBPR. These strategies can better protect research participants from the harm of unnecessary delays and exclusion from the research process, while facilitating the ethical communication of study results to participants and communities.
Together, community-based participatory research (CBPR), usercentered design (UCD) and health information technology (HIT) offer promising approaches to improve health disparities in low-resource settings.
This article describes the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based diabetes medication education and decision support tool delivered by community health workers (CHWs) to African-American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants’ homes.
The overlapping principles of CBPR and UCD used to develop iDecide/Decido include: a user-focused or community approach; equitable academic and community partnership in all study phases; an iterative development process that relies on input from all stakeholders; and a program experience that is specified, adapted, and implemented with the target community.
Collaboration between community members, researchers, and developers is especially evident in the program’s design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools.
Applying the principles of CBPR and UCD can be successfully employed in developing health information tools that are easy to use and understand, interactive, and target health disparities.
Community-based participatory research; health information technology; user-centered design; decision aid; community health worker; health disparities; diabetes
The Charlotte-Mecklenburg region has one of the fastest growing Hispanic communities in the country. This population has experienced disparities in health outcomes and diminished ability to access healthcare services. This city is home to an established practice-based research network (PBRN) that includes community representatives, health services researchers, and primary care providers. The aims of this project are: to use key principles of community-based participatory research (CBPR) within a practice-based research network (PBRN) to identify a single disease or condition that negatively affects the Charlotte Hispanic community; to develop a community-based intervention that positively impacts the chosen condition and improves overall community health; and to disseminate findings to all stakeholders.
This project is designed as CBPR. The CBPR process creates new social networks and connections between participants that can potentially alter patterns of healthcare utilization and other health-related behaviors. The first step is the development of equitable partnerships between community representatives, providers, and researchers. This process is central to the CBPR process and will occur at three levels -- community members trained as researchers and outreach workers, a community advisory board (CAB), and a community forum. Qualitative data on health issues facing the community -- and possible solutions -- will be collected at all three levels through focus groups, key informant interviews and surveys. The CAB will meet monthly to guide the project and oversee data collection, data analysis, participant recruitment, implementation of the community forum, and intervention deployment. The selection of the health condition and framework for the intervention will occur at the level of a community-wide forum. Outcomes of the study will be measured using indicators developed by the participants as well as geospatial modeling.
On completion, this study will: determine the feasibility of the CBPR process to design interventions; demonstrate the feasibility of geographic models to monitor CBPR-derived interventions; and further establish mechanisms for implementation of the CBPR framework within a PBRN.
The National Institutes of Health–funded Clinical and Translational Science Awards (CTSA) have increasingly focused on community-engaged research and funded investigators for community-based participatory research (CBPR). However, because CBPR is a collaborative process focused on community-identified research topics, the Harvard CTSA and its Community Advisory Board (CERAB) funded community partners through a CBPR initiative.
We describe lessons learned from this seed grants initiative designed to stimulate community–academic CBPR partnerships.
The CBPR program of the Harvard CTSA and the CERAB developed this initiative and each round incorporated participant and advisory feedback toward program improvement.
Although this initiative facilitated relevant and innovative research, challenges included variable community research readiness, insufficient project time, and difficulties identifying investigators for new partnerships.
Seed grants can foster innovative CBPR projects. Similar initiatives should consider preliminary assessments of community research readiness as well as strategies for meaningful academic researcher engagement.
Community-based participatory research; clinical and translational research; capacity building; seed grants; community–academic partnerships
In this nation, the unequal burden of disease among People of Color has been well documented. One starting point to eliminating health disparities is recognizing the existence of inequities in health care delivery and identifying the complexities of how institutional racism may operate within the health care system. In this paper, we explore the integration of community-based participatory research (CBPR) principles with an Undoing Racism process to conceptualize, design, apply for, and secure National Institutes of Health (NIH) funding to investigate the complexities of racial equity in the system of breast cancer care. Additionally, we describe the sequence of activities and “necessary conflicts” managed by our Health Disparities Collaborative to design and submit an application for NIH funding. This process of integrating CBPR principles with anti-racist community organizing presented unique challenges that were negotiated only by creating a strong foundation of trusting relationships that viewed conflict as being necessary. The process of developing a successful NIH grant proposal illustrated a variety of important lessons associated with the concepts of cultural humility and cultural safety. For successfully conducting CBPR, major challenges have included: assembling and mobilizing a partnership; the difficulty of establishing a shared vision and purpose for the group; the problem of maintaining trust; and the willingness to address differences in institutional cultures. Expectation, acceptance and negotiation of conflict were essential in the process of developing, preparing and submitting our NIH application. Central to negotiating these and other challenges has been the utilization of a CBPR approach.
Breast cancer; Community-based participatory research; Health disparities; Institutional racism.
Solutions to complex health and environmental issues experienced by First Nations communities in Canada require the adoption of collaborative modes of research. The traditional “helicopter” approach to research applied in communities has led to disenchantment on the part of First Nations people and has impeded their willingness to participate in research. University researchers have tended to develop projects without community input and to adopt short term approaches to the entire process, perhaps a reflection of granting and publication cycles and other realities of academia. Researchers often enter communities, collect data without respect for local culture, and then exit, having had little or no community interaction or consideration of how results generated could benefit communities or lead to sustainable solutions. Community-based participatory research (CBPR) has emerged as an alternative to the helicopter approach and is promoted here as a method to research that will meet the objectives of both First Nations and research communities. CBPR is a collaborative approach that equitably involves all partners in the research process. Although the benefits of CBPR have been recognized by segments of the University research community, there exists a need for comprehensive changes in approaches to First Nations centered research, and additional guidance to researchers on how to establish respectful and productive partnerships with First Nations communities beyond a single funded research project. This article provides a brief overview of ethical guidelines developed for researchers planning studies involving Aboriginal people as well as the historical context and principles of CBPR. A framework for building research partnerships with First Nations communities that incorporates and builds upon the guidelines and principles of CBPR is then presented. The framework was based on 10 years’ experience working with First Nations communities in Saskatchewan. The framework for research partnership is composed of five phases. They are categorized as the pre-research, community consultation, community entry, research and research dissemination phases. These phases are cyclical, non-linear and interconnected. Elements of, and opportunities for, exploration, discussion, engagement, consultation, relationship building, partnership development, community involvement, and information sharing are key components of the five phases within the framework. The phases and elements within this proposed framework have been utilized to build and implement sustainable collaborative environmental health research projects with Saskatchewan First Nations communities.
Saskatchewan first nations; community-based participatory research; framework; engagement; consultation; ethical partnership
Community-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example.
The CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR’s Health and Well-being Project’s corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination.
To date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and community relevance and equity in the research agenda.
CBPR methods have the ability to enable and strengthen epidemiological and public health research in sub-Saharan Africa within the social, political, economic and cultural contexts of the diverse communities on the continent. This project demonstrates that adaptation of these methods is crucial to the successful implementation of a community-based project involving a highly vulnerable population.
Community-based participatory research; Sub-Saharan Africa; Orphaned and separated children
Community mobilization and collaboration among diverse partners are vital components of the effort to reduce and eliminate cancer disparities in the United States. We studied the development and impact of intersectoral connections among the members of the Massachusetts Community Network for Cancer Education, Research, and Training (MassCONECT). As one of the Community Network Program sites funded by the National Cancer Institute, this infrastructure-building initiative utilized principles of Community-based Participatory Research (CBPR) to unite community coalitions, researchers, policymakers, and other important stakeholders to address cancer disparities in three Massachusetts communities: Boston, Lawrence, and Worcester. We conducted a cross-sectional, sociometric network analysis four years after the network was formed. A total of 38 of 55 members participated in the study (69% response rate). Over four years of collaboration, the number of intersectoral connections reported by members (intersectoral out-degree) increased, as did the extent to which such connections were reported reciprocally (intersectoral reciprocity). We assessed relationships between these markers of intersectoral collaboration and three intermediate outcomes in the effort to reduce and eliminate cancer disparities: delivery of community activities, policy engagement, and grants/publications. We found a positive and statistically significant relationship between intersectoral out-degree and community activities and policy engagement (the relationship was borderline significant for grants/publications). We found a positive and statistically significant relationship between intersectoral reciprocity and community activities and grants/publications (the relationship was borderline significant for policy engagement). The study suggests that intersectoral connections may be important drivers of diverse intermediate outcomes in the effort to reduce and eliminate cancer disparities. The findings support investment in infrastructure-building and intersectoral mobilization in addressing disparities and highlight the benefits of using CBPR approaches for such work.
This paper describes efforts to generate evidence for community-developed programs to enhance family relationships in the Chinese culture of Hong Kong, within the framework of community-based participatory research (CBPR).
The CBPR framework was applied to help maximize the development of the intervention and the public health impact of the studies, while enhancing the capabilities of the social service sector partners.
Four academic-community research teams explored the process of designing and implementing randomized controlled trials in the community. In addition to the expected cultural barriers between teams of academics and community practitioners, with their different outlooks, concerns and languages, the team navigated issues in utilizing the principles of CBPR unique to this Chinese culture. Eventually the team developed tools for adaptation, such as an emphasis on building the relationship while respecting role delineation and an iterative process of defining the non-negotiable parameters of research design while maintaining scientific rigor. Lessons learned include the risk of underemphasizing the size of the operational and skills shift between usual agency practices and research studies, the importance of minimizing non-negotiable parameters in implementing rigorous research designs in the community, and the need to view community capacity enhancement as a long term process.
The four pilot studies under the FAMILY Project demonstrated that nuanced design adaptations, such as wait list controls and shorter assessments, better served the needs of the community and led to the successful development and vigorous evaluation of a series of preventive, family-oriented interventions in the Chinese culture of Hong Kong.
Community interventions; Chinese; Parenting; Community-based participatory research; Randomized controlled trials
Community-based participatory research (CBPR) emphasizes collaborative efforts among communities and academics where all members are equitable contributors. Capacity building through training in research methodology is a potentially important outcome for CBPR partnerships.
To describe the logistics and lessons learned from building community research capacity for focus group moderation in the context of a CBPR partnership.
After orientation to CBPR principles, members of a US suburban community underwent twelve hours of interactive learning in focus group moderation by a national focus group expert. An additional eight-hour workshop promoted advanced proficiency and built on identified strengths and weaknesses. Ten focus groups were conducted at an adult education center addressing a health concern previously identified by the center’s largely immigrant and refugee population. Program evaluation was achieved through multiple observations by community and academic-based observers.
Twenty-seven community and academic members were recruited through established relationships for training in focus group moderation, note-taking, and report compilation. Focus group training led to increased trust among community and research partners while empowering individual community members and increasing research capacity for CBPR.
Community members were trained in focus group moderation and successfully applied these skills to a CBPR project addressing a health concern in the community. This approach of equipping community members with skills in a qualitative research method promoted capacity building within a socio-culturally diverse community, while strengthening community-academic partnership. In this setting, capacity building efforts may help to ensure the success and sustainability for continued health interventions through CBPR.
Capacity building; community-based participatory research; focus groups; immigrant or ethnic populations; qualitative research
The growing literature on community-based participatory research (CBPR) suggests that a participatory approach benefits science in important ways. However there have been few formal evaluations of a CBPR approach itself, and few standards developed to assist in such efforts.
This evaluation used CBPR guidelines developed by Green and colleagues to evaluate the participatory approach of the Community Outreach and Translation Core (COTC) of the Bay Area Breast Cancer and the Environment Research Center (BABCERC) in translating scientific findings from two key projects to the public.
To assess key stakeholders’ perceptions of alignment between the projects and the guidelines, four COTC members, four researchers, and four community members rated the projects on each of the 26 guidelines. These data were triangulated with transcripts from interviews with the same participants and a focus group with a subset of the participants.
The participatory approach by the COTC resulted in many important benefits including improved relationships among diverse stakeholders, knowledge generation, increased sensitivity and propriety of the research, and increased community support of research. However, several atypical features of this collaboration—for example, the basic and etiological nature of the science being undertaken, and the multiple communities (lay and activist/advocate) involved—resulted in different levels and qualities of participation among stakeholders.
Further research should focus on the adaptation of participatory research principles for different kinds of community partners and on the development and refinement of standards and tools to assist in evaluating the process and outcome of participatory research.
Community-based participatory research; community health partnerships; process issues; breast cancer; environmental research; translation; dissemination; outreach
Over the past several decades there has been growing evidence of the increase in incidence rates, morbidity, and mortality for a number of health problems experienced by children. The causation and aggravation of these problems are complex and multifactorial. The burden of these health problems and environmental exposures is borne disproportionately by children from low-income communities and communities of color. Researchers and funding institutions have called for increased attention to the complex issues that affect the health of children living in marginalized communities—and communities more broadly—and have suggested greater community involvement in processes that shape research and intervention approaches, for example, through community-based participatory research (CBPR) partnerships among academic, health services, public health, and community-based organizations. Centers for Children’s Environmental Health and Disease Prevention Research (Children’s Centers) funded by the National Institute of Environmental Health Sciences and U.S. Environmental Protection Agency were required to include a CBPR project. The purpose of this article is to provide a definition and set of CBPR principles, to describe the rationale for and major benefits of using this approach, to draw on the experiences of six of the Children’s Centers in using CBPR, and to provide lessons learned and recommendations for how to successfully establish and maintain CBPR partnerships aimed at enhancing our understanding and addressing the multiple determinants of children’s health.
children’s health; collaborative research; community-based participatory research; partnership
The consequences of agricultural pesticide exposure continue to be major environmental health problems in rural communities. Community-based participatory research (CBPR) is an important approach to redressing health disparities resulting from environmental causes. In this article we introduce a collection of articles that describe projects using CBPR to address the health disparities resulting from pesticide exposure in agricultural communities, particularly the communities of migrant and seasonal farmworkers. The articles in this collection are based on a workshop convened at the 1999 American Public Health Association meeting. The goals in presenting this collection are to provide those endeavoring to initiate CBPR projects needed information, guidelines, and procedures to improve the quality of the CBPR experience; to increase the scientific validity of CBPR projects; and to reduce the potential difficulties and stress of these collaborations. In this introduction we discuss the context in which these projects operate, summarizing background information about farmworkers in the United States, what is known about farmworker pesticide exposure, and the concept of community-based participatory research. Finally, the articles in this collection are summarized, and major themes common to successful CBPR projects are identified. These common features are taking the time to interact with the community, using multiple approaches to engage the different parts of the community, understanding different participants often have different goals, appreciating each group's strengths, valuing community knowledge, and being flexible and creative in conducting research. The final article in this collection describes the translational research program at the National Institute of Environmental Health Sciences (NIEHS) highlighting activities pertinent to the health of rural communities, giving an overview of NIEHS-supported projects addressing health concerns of Native Americans and rural African-American communities in addition to farmworkers, and discussing future plans for CBPR at NIEHS.
Interest in community-based participatory research (CBPR) has surged in the last several years based on its potential to enhance the quality and usefulness of research outcomes. Practice-based research networks (PBRNs) potentially provide a bridge between the research endeavor and communities, and PBRNs have been identified as a promising venue for CBPR. This marriage of CBPR and PBRNs, however, faces many challenges, such as locus of project idea generation, time constraints, and funding limitations.
Case study description of the application of the CBPR model and specific CBPR principles to PBRN research, using a recent PBRN study of communication about traditional, complementary, and alternative medicine.
Challenges (e.g., added cost, time) and benefits (e.g., improved research data collection process, enhanced data analysis) resulted from application of the CBPR model and are detailed.
For practical and ethical reasons, PBRNs need to adopt the CBPR approach for certain types, if not all, of their research. This might require operational adaptations by the PBRN (e.g., a community advisory board, community membership in the network board of directors, outreach to community groups for input into network priorities) as well as dedicated time and funding.
Background: Marietta, Ohio, is an Appalachian-American community whose residents have long struggled with understanding their exposure to airborne manganese (Mn). Although community engagement in research is strongly endorsed by the National Institutes of Health and the National Institute of Environmental Health Sciences in particular, little has been documented demonstrating how an academic–community partnership that implements the community-based participatory research (CBPR) principles can be created and mobilized for research.
Objectives: We created a bidirectional, academic–community partnership with an Appalachian-American community to a) identify the community’s thoughts and perceptions about local air quality, its effect on health, and the perception of risk communication sources and b) jointly develop and conduct environmental health research.
Methods: We formed a community advisory board (CAB), jointly conducted pilot research studies, and used the results to develop a community-driven research agenda.
Results: Persons in the community were “very concerned” to “concerned” about local air quality (91%) and perceived the air quality to have a direct impact on their health and on their children’s health (93% and 94%, respectively). The CAB identified the primary research question: “Does Mn affect the cognition and behavior of children?” Although the community members perceived research scientists as the most trusted and knowledgeable regarding risks from industrial emissions, they received very little risk information from research scientists.
Conclusions: Engaging a community in environmental health research from its onset enhanced the quality and relevance of the research investigation. The CBPR principles were a useful framework in building a strong academic–community partnership. Because of the current disconnect between communities and research scientists, academic researchers should consider working collaboratively with community-based risk communication sources.
academic–community partnership; air quality; Appalachian American; community advisory board; community-based participatory research; manganese; risk perception
The past two decades have witnessed a rapid proliferation of community-based participatory research (CBPR) projects. CBPR methodology presents an alternative to traditional population-based biomedical research practices by encouraging active and equal partnerships between community members and academic investigators. The National Institute of Environmental Health Sciences (NIEHS), the premier biomedical research facility for environmental health, is a leader in promoting the use of CBPR in instances where community-university partnerships serve to advance our understanding of environmentally related disease. In this article, the authors highlight six key principles of CBPR and describe how these principles are met within specific NIEHS-supported research investigations. These projects demonstrate that community-based participatory research can be an effective tool to enhance our knowledge of the causes and mechanisms of disorders having an environmental etiology, reduce adverse health outcomes through innovative intervention strategies and policy change, and address the environmental health concerns of community residents.
Cancer education seminars for Appalachian populations were conducted to: (1) increase knowledge of existing cancer disparities, (2) disseminate findings from Appalachian community-based participatory research (CBPR) projects, and (3) foster CBPR capacity building among community members by promoting social networking. Evaluation of the seminars was completed by: (1) using pre–post-surveys to assess changes in knowledge and attitudes at three regional and one national seminar and (2) measuring a change in the social network patterns of participants at a national seminar by analyzing the names of individuals known at the beginning and at the end of the seminar by each participant. Among participants, there was a significant increase in knowledge of Appalachian cancer disparities at two seminars [national, t(145)=3.41, p=0.001; Pennsylvania, t(189)=3.00, p=0.003] and a change in attitudes about Appalachia at one seminar [Ohio t(193)=−2.80, p=0.006]. Social network analysis, operationally defined for this study as familiarity with individuals attending the conference, showed participation in the national seminar fostered capacity building for future CBPR by the development of new network ties. Findings indicate that short-term outcomes of the seminars were accomplished. Future educational seminars should consider using social network analysis as a new evaluation methodology.
Appalachian region; Health disparities; Cancer
Community-based participatory research (CBPR) holds the promise of improving the planning, conduct, and long-term translation of research findings into community settings.
This 2-year, exploratory study applied CBPR structures and processes to the identification of individual, cultural and community factors associated with obesity among Pacific Islander (PI) youth in Southern California.
We describe the CBPR principles and strategies used by a community–university partnership to develop, implement, and report on the findings from assessments of obesity, physical activity, and nutritional intake among PI youth.
Although CBPR planning processes led to successes in community-based youth recruitment and retention, we learned key lessons regarding implementation of tailored assessment protocols, often involving problems arising from the university side of the CBPR collaborative.
CBPR has its strengths and limits; more studies are needed that report on processes to increase our understanding of how to balance research rigor with community sustainability.
Community-based participatory research; primary prevention community health research