Using community-based participatory approaches to mobilize communities for policy change

The Racial and Ethnic Approaches to Community Health (REACH) Alabama Breast and Cervical Cancer Coalition used community-based participatory research principles to address breast and cervical cancer disparities among Alabama's most vulnerable African American communities. With funding from the Centers for Disease Control and Prevention, the Alabama Breast and Cervical Cancer Coalition implemented a multilevel action plan, which entailed disseminating evidence-based strategies to community organizations interested in addressing cancer and other health disparities. Based on the Alabama Breast and Cervical Cancer Coalition's technical assistance on advocacy, an independent, community-led coalition was formed. This article uses a case study approach to document the steps taken by this empowered coalition to mobilize their community to impact cancer disparities using community-based participatory research principles as a tool to change tobacco and breast and cervical cancer legislation.     

Community-based participatory research: policy recommendations for promoting a partnership approach in health research

Community-based participatory research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and integrate the knowledge gained with action to benefit the community involved. This article presents key principles of community-based participatory research (CBPR), discusses the rationale for its use, and provides a number of policy recommendations at the organizational, community and national levels aimed at advancing the application of CBPR. While the issues addressed here draw primarily upon experiences in the United States, the emphasis throughout this article on the establishment of policies to enhance equity that would serve both to increase the engagement of communities as partners in health research, and to reduce health disparities, has relevant applications in a global context.     

Participatory action research: considerations for ethical review

This paper addresses the distinctive nature of participatory action research (PAR) in relation to ethical review requirements. As a framework for conducting research and reducing health disparities, PAR is gaining increased attention in community and public health research. As a result, PAR researchers and members of Research Ethics Boards could benefit from an increased understanding of the array of ethical concerns that can arise. We discuss these concerns in light of commonly held ethical requirements for clinical research (social or scientific value, scientific validity, fair subject/participant selection, favourable risk-benefit ratio, independent review, informed consent, and respect for potential and enrolled participants) and refer to guidelines specifically developed for participatory research in health promotion. We draw from our community-based experiences in mental health promotion research with immigrant and culturally diverse youth to illustrate the ethical advantages and challenges of applying a PAR approach. We conclude with process suggestions for Research Ethics Boards.     

Reducing disparities for African Americans with diabetes: progress made by the REACH 2010 Charleston and Georgetown Diabetes Coalition

Racial and Ethnic Approaches to Community Health (REACH 2010) is a U.S.Centers for Disease Control and Prevention demonstration program that responds to the U.S. Department of Health and Human Services' goal to eliminate racial and ethnic disparities in health status by the year 2010. As part of REACH 2010, community projects were funded to develop, implement, and evaluate community action plans to improve health care and outcomes for racial and ethnic populations. This article describes the program and details the progress of the REACH 2010: Charleston and Georgetown Diabetes Coalition in reducing disparities in care. Approaches employed by the Coalition included community development, empowerment, and education related to diabetes; health systems change associated with access, care, and education; and coalition advocacy. Racial disparities were identified for 12,000 African Americans with diabetes in this urban/rural South Carolina community. After 24 months, significant differences that initially ranged from 11% to 28% in African Americans (when compared with whites/others) were not observed on 270 chart audits for A1C, lipid and kidney testing, eye examinations, and blood pressure control. Future efforts will focus on maintaining progress, eliminating other disparities, and identifying the contributions of each intervention in eliminating racial disparities.     

A participatory action research pilot study of urban health disparities using rapid assessment response and evaluation

Healthy People 2010 made it a priority to eliminate health disparities. We used a rapid assessment response and evaluation (RARE) to launch a program of participatory action research focused on health disparities in an urban, disadvantaged Black community serviced by a major south Florida health center. We formed partnerships with community members, identified local health disparities, and guided interventions targeting health disparities. We describe the RARE structure used to triangulate data sources and guide intervention plans as well as findings and conclusions drawn from scientific literature and epidemiological, historic, planning, clinical, and ethnographic data. Disenfranchisement and socioeconomic deprivation emerged as the principal determinants of local health disparities and the most appropriate targets for intervention.     

Building and maintaining trust in a community-based participatory research partnership

Although intervention research is vital to eliminating health disparities, many groups with health disparities have had negative research experiences, leading to an understandable distrust of researchers and the research process. Community-based participatory research (CBPR) approaches seek to reverse this pattern by building trust between community members and researchers. We highlight strategies for building and maintaining trust from an American Indian CBPR project and focus on 2 levels of trust building and maintaining: (1) between university and community partners and (2) between the initial project team and the larger community. This article was cowritten by community and academic partners; by offering the voices of community partners, it provides a novel and distinctive contribution to the CBPR literature.     

Using community-based participatory research to address health disparities

Community-based participatory research (CBPR) has emerged in the past decades as an alternative research paradigm, which integrates education and social action to improve health and reduce health disparities. More than a set of research methods, CBPR is an orientation to research that focuses on relationships between academic and community partners, with principles of colearning, mutual benefit, and long-term commitment and incorporates community theories, participation, and practices into the research efforts. As CBPR matures, tensions have become recognized that challenge the mutuality of the research relationship, including issues of power, privilege, participation, community consent, racial and/or ethnic discrimination, and the role of research in social change. This article focuses on these challenges as a dynamic and ever-changing context of the researcher-community relationship, provides examples of these paradoxes from work in tribal communities, discusses the evidence that CBPR reduces disparities, and recommends transforming the culture of academia to strengthen collaborative research relationships.     

Using Community‐Based Participatory Research (CBPR) to Target Health Disparities in Families

Community‐based participatory research (CBPR) is an action research approach that emphasizes collaborative partnerships between community members, community organizations, health care providers, and researchers to generate knowledge and solve local problems. Although relatively new to the field of family social science, family and health researchers have been using CBPR for over a decade. This paper introduces CBPR methods, illustrates the usefulness of CBPR methods in families and health research, describes two CBPR projects related to diabetes, and concludes with lessons learned and strengths and weaknesses of CBPR.     

Faith Wellness Collaboration: A Community-Based Approach to Address Type II Diabetes Disparities in an African-American Community

Community-based participatory action research was utilized to form a collaboration that developed a Health Ministry program in four Northeastern urban Black Churches, in which they designed and implemented a culturally competent Type II Diabetes self management education program. Minister sponsorship and a program coordinator synchronized the four Health Ministries' development and diabetes program planning. A case study design, and participant observations and a focus group methodology were used to explore the faith-based community residents' collaboration development, and design and implementation of the health promotion program. The implementation process can be described as occurring in four essential elements: (1) the development of the health ministry in each of the four churches; (2) the process in which the four ministries coordinated their activities to create the diabetes education program; (3) the process of delivering the diabetes education program; and (4) the challenges in promoting the diabetes education program across the community. Practice implications, as well as cultural competency issues related to social work practice with faith-based organizations and African-American communities, are also presented.     

Faith wellness collaboration: a community-based approach to address type II diabetes disparities in an African-American community

Community-based participatory action research was utilized to form a collaboration that developed a Health Ministry program in four Northeastern urban Black Churches, in which they designed and implemented a culturally competent Type II Diabetes self management education program. Minister sponsorship and a program coordinator synchronized the four Health Ministries' development and diabetes program planning. A case study design, and participant observations and a focus group methodology were used to explore the faith-based community residents' collaboration development, and design and implementation of the health promotion program. The implementation process can be described as occurring in four essential elements: (1) the development of the health ministry in each of the four churches; (2) the process in which the four ministries coordinated their activities to create the diabetes education program; (3) the process of delivering the diabetes education program; and (4) the challenges in promoting the diabetes education program across the community. Practice implications, as well as cultural competency issues related to social work practice with faith-based organizations and African-American communities, are also presented.     

Understanding community perceptions of health and social needs in a rural Balinese village: results of a rapid participatory appraisal

This article reviews the process and key recommendations derived from conducting a rapid participatory asset-focused health and social needs assessment in the small traditional rural village of Tulikup, Bali. The assessment aimed to develop recommendations for a community radio station based in Tulikup to promote social change and development. The health and social needs assessment utilized an asset-focused rapid participatory assessment cycle methodological framework, incorporating Annett and Rifkin's (1995) guidelines for rapid participatory appraisals (World Health Organization, Geneva), community-based action research (Sage Publications, California; Stringer, 1996) and asset-based community development. The study explored Tulikup's pre-existing assets and highlights the value of using rapid participatory appraisal techniques as a first step in involving communities in assessing needs and planning meaningful community development strategies. Data was collected over a 3-week in-country period and included interviews with key informants, informal individual and group discussions, field observations and reviews of existing secondary data sources. Triangulation using cultural interpreters, and participatory consultation processes with community members helped ensure data reliability and validity. Recent terrorist attacks in Indonesia and, most notably, Bali, have had widespread economic and social effects throughout Bali. In particular, secondary consequences of unemployment and a reduction in income have had negative impacts on population health and child labour at the village level. The findings and recommendations of the health and social needs rapid assessment have been utilized by the radio station to promote social change and development.     

Engaging Youth in Food Activism in New York City: Lessons Learned from a Youth Organization, Health Department, and University Partnership

Research indicates that insufficient emphasis on community collaboration and partnership can thwart innovative community-driven work on the social determinants of health by local health departments. Appreciating the importance of enhancing community participation, the New York City Department of Health and Mental Hygiene (DOHMH) helped lead the development of the Health Equity Project (HEP), an intervention aimed at increasing the capacity of urban youth to identify and take action to reduce food-related health disparities. DOHMH partnered with the City University of New York School of Public Health and several local youth organizations to design and implement the intervention. HEP was conducted with 373 young people in 17 cohorts at 14 unique sites: six in Brooklyn, six in the Bronx, and two in Harlem. Partnered youth organizations hosted three stages of work: interactive workshops on neighborhood health disparities, food environments, and health outcomes; food-focused research projects conducted by youth; and small-scale action projects designed to change local food environments. Through these activities, HEP appears to have been successful in introducing youth to the social, economic, and political factors that shape food environments and to the influence of food on health outcomes. The intervention was also somewhat successful in providing youth with community-based participatory research skills and engaging them in documenting and then acting to change their neighborhood food environments. In the short term, we are unable to assess how successful HEP has been in building young leaders who will continue to engage in this kind of activism, but we suspect that more extended interactions would be needed to achieve this more ambitious goal. Experiences at these sites suggest that youth organizations with a demonstrated capacity to engage youth in community service or activism and a commitment to improving food or other health-promoting community resources make the most suitable and successful partners for this kind of effort.     

Qualitative Exploration of Cultural Influence on a Rural Health-Promotion Initiative

ObjectiveTo develop a conceptualization of cultural influence on perceptions of a rural food and physical activity policy, systems, and environmental (PSE) change project to inform public health research and practice.DesignBasic qualitative research design, semistructured phone interviews with community health coalition members.SettingFive rural Southern counties (obesity prevalence > 40%).ParticipantsThirty-nine community coalition members.InterventionThe Centers for Disease Control and Prevention High Obesity Program. PSE initiatives to increase access to healthy food and physical activity opportunities through a community coalition model.Phenomenon of InterestSocial norms and cultural influences surrounding community members’ food preferences, physical activity behavior, and future hopes for community development.AnalysisAbductive content analysis.ResultsMajor categories on food social norms (subcategories: physical health, eating habits, and food preference), race relations, generational factors, physical activity social norms, and hopes for the community (subcategories: increased engagement, health, awareness, cohesion, and inspiration) were discussed in relation to the progress of PSE initiatives.Conclusions and ImplicationsBecause of community member perceptions, PSE initiatives became associated with factors beyond food and fitness, such as race relations, generational differences, and community cohesion. A focus on increased youth and church involvement, community values, relationship building, and input from diverse voices can be foundational to culturally-appropriate PSE efforts in rural settings.     

The Culture of Health Survey: A Qualitative Assessment of a Diabetes Prevention Coalition

In the past two decades, the fields of public health and social services have increasingly turned toward collaborative and community-based approaches to address complex health and social issues. One aspect of these approaches has been the development and implementation of community coalitions. Coalitions have been used to successfully address a wide range of issues, including cancer prevention, tobacco use, HIV/AIDS, youth violence, heart disease, diabetes, and sexual exploitation of youth runaways. In south Tucson, Arizona the SEAH coalition was developed to address diabetes and substance abuse prevention. Using a qualitative interview guide, the Culture of Health Survey, this study was aimed at identifying community perceptions of the coalition and its effectiveness in the areas of community leadership, partnerships, trust, and movement towards positive change. We also sought to document the dissemination, throughout a community, of information on the activities and functioning of a community based coalition and whether or not it was seen as one that held fast to the community values and not to individual agendas. Results highlight the importance of outreach, education, trust, and partnerships in promoting diabetes prevention through a community coalition.     

Skill improvement among coalition members in the California Healthy Cities and Communities Program

Community-driven, collaborative approaches to health promotion have the potential to enhance skills among community members and, in turn, increase community capacity. This study uses data from an evaluation of the California Healthy Cities and Communities (CHCC) Program to examine whether, and how, community problem-solving and collaboration skills are improved among coalition members and local coordinators in 20 participating communities. Methods include semi-structured interviews with coordinators and mailed surveys with coalition members (n=330 in planning phase and n=243 in implementation phase). The largest number of coordinators reported skill improvement in defining health broadly and assessing needs and assets. Similarly, coalition members reported greatest skill improvement for defining health broadly, assessing needs and assets and setting priorities and developing action plans. Modest correlations were observed between number of roles played in the local healthy cities and communities project and each skill area assessed. Time committed to the local CHCC coalition and its activities was not meaningfully correlated with any of the skills. Types of skill-building opportunities may be more important than number of hours devoted to meetings and activities in strengthening community problem-solving and collaboration skills among coalition members.     

Honouring the role of community in community health work with Cambodian Americans

Despite surviving extreme forms of violence, torture and other traumas during the Khmer Rouge genocide and forced migration, Cambodian Americans experience devastating health inequities and barriers to health access in the United States (U.S.). From the perspective of Cambodian American community health workers (CHWs), we explored three aims in this community‐based participatory research (CBPR), qualitative study: Cambodian Americans’ understanding of health, community health work strategies that improve health access of Cambodian Americans, and action steps that improve health access for Cambodian Americans. From 2014 to 2016, our two‐phased study spanned seven U.S. states, which included a focus group (n = 5) and 16 semistructured interviews. Participants identified an indigenous concept of health, and micro‐level (e.g. service navigation, peer education) and mezzo‐level interventions (e.g. community building, coalition work) to improve health access. Finally, Khmer Health Advocates, a community‐based health advocacy organisation, served as a vital study partner in this CBPR study.     

Legitimizing diabetes as a community health issue: a case analysis of an Aboriginal community in Canada

The Kahnawake Schools Diabetes Prevention Project (KSDPP) is an ongoing participatory research and intervention project aimed at the primary prevention of type 2 diabetes. Formally initiated in 1994 with strong community support, KSDPP provides a fertile opportunity to learn about how a community came to identify the need for preventive action on a health problem such as diabetes. The purpose of our study was to describe the various conditions in the community of Kahnawake, which gave rise to its mobilization for the prevention of type 2 diabetes. Qualitative data consisted of 12 individual interviews and one focus group with key community members and health professionals living and/or working in the community of Kahnawake, along with historically relevant documents. The data collection and analysis procedures of the grounded theory method were applied. Results describe a preceding phase to formal KSDPP implementation, triggered by returning research results on the community prevalence of type 2 diabetes. This phase of 'legitimizing diabetes as a community health issue' is characterized by a shift in the perceived preventability of diabetes among community members; from a problem that was to be lived with to a problem that was to be prevented. The shift in perceptions was facilitated by the context in the community, described by structural developments, cognitive and relational elements. In addition to reaffirming the critical importance of utilizing lay knowledge during the planning of a health promotion intervention, our study has uncovered some of the key conditions through which individuals in the community came to participate in the identification and planning of a diabetes prevention project.     

Conducting a Needs Assessment for Women and Girls Using a Gender Analysis Framework: The Philadelphia Ujima Coalition for a Healthier Community Experience

IntroductionDespite a century of work toward gender equality, sex and gender disparities in health remain. Morbidity and mortality rates as well as quality of care received differ between men and women. The Philadelphia Ujima Coalition for a Healthier Community is composed of 23 academic, social service, wellness, faith-based, governmental, and healthcare organizations. The coalition, funded by the U.S. Department of Health and Human Services, Office on Women's Health, used a community participatory framework to conduct a gender-informed needs assessment of priority areas for women's health.MethodsA four-tiered approach was used: 1) Coalition members identified priority areas; 2) we analyzed data from the Southeastern Pennsylvania 2010 Household Health Survey to identify gender differences in health; 3) using a gender analysis framework, we conducted interviews with “key informant” stakeholders; and 4) we conducted a community health assessment including 160 women. We used a participatory process to rank priority areas.ResultsSex and gender disparities in health outcomes and behaviors were observed. Data were used to identify gender barriers and norms that influence health practices and behaviors, defining priority areas for the health of women and girls. Effective health promotion strategies were also identified.ConclusionsA gender-integrated needs assessment of girls and women can reveal priority areas and gender-related objectives that should be included in health promotion programming for girls and women.