Implementation Of Community-based Participatory Research Research Articles

Abstract P164: Using Mixed Methods to Assess Community Based Participatory Research Implementation: Assessment of a Walking-Based Health Intervention Program

Introduction: The Border Coalition for Fitness (BCF) is a community-based organization sponsored by Texas Tech University Health Sciences Center El Paso(TTUHSC El Paso) that facilitates walking-based programs. These interventions aim to increase physical activity among a majority Hispanic population in El Paso, TX. To provide programming that effectively meets the community's needs, the BCF aims to operate within a community-based participatory research (CBPR) framework that centers on community engagement and the translation of research into tangible benefits to the community. This mixed methods assessment examines perceptions of the BCF and its impact on the community. Methods: For the quantitative study, depending on the self-selected group (BCF, community leader, or community participant), respondents completed either a leadership (BCF, community leaders) or non-leadership (community participants) questionnaire. Both assess perceptions on a scale from 0 to 10, 10 being the best, across three constructs: leadership(L), resources(R), and ability and commitment to organize(C). For the qualitative study, members of the BCF and former walking intervention participants completed one-on-one interviews consisting of 13 open-ended questions. Qualitative interviews are ongoing. Results: Preliminary results from the quantitative survey (n=103) show high ratings across stakeholder groups and constructs. BCF members consistently represent the highest ratings (L:9.6; R:9.6; C:9.3) across all constructs, followed by the community leaders (L:8.3; R:8.1; C:8.5), and finally, community participants (L:8.0; R:7.7; C:7.6). There is good agreement among BCF members (n=5) and community members (n=2) that the BCF has a strong collaborative relationship with its academic sponsor and the community and provides impactful programming. Areas cited for improvement included a need for more autonomy on the part of the BCF and improved understanding of and interaction with the BCF on the part of community members. Conclusion: In conclusion, early findings from this mixed-methods assessment indicate strong support for the BCF and its programming among leadership and the community. However, insight gained from the qualitative interviews highlights several areas of improvement in terms of community-based participatory research practices, particularly encouraging community engagement with the BCF beyond participation in the walking-based programs.

Mapping for Engagement: Setting up a Community Based Participatory Research Project to Reach Underserved Communities at Risk for Hepatitis C in Ho Chi Minh City, Vietnam.

BackgroundApproximately 1. 07 million people in Vietnam are infected with hepatitis C virus (HCV). To address this epidemic, the South East Asian Research Collaborative in Hepatitis (SEARCH) launched a 600-patient cohort study and two clinical trials, both investigating shortened treatment strategies for chronic HCV infection with direct-acting antiviral drugs. We conducted ethnographic research with a subset of trial participants and found that the majority were aware of HCV infection and its implications and were motivated to seek treatment. However, people who inject drugs (PWID), and other groups at risk for HCV were under-represented, although injecting drug use is associated with high rates of HCV.Material and MethodsWe designed a community-based participatory research (CBPR) study to engage in dialogues surrounding HCV and other community-prioritized health issues with underserved groups at risk for HCV in Ho Chi Minh City. The project consists of three phases: situation analysis, CBPR implementation, and dissemination. In this paper, we describe the results of the first phase (i.e., the situation analysis) in which we conducted desk research and organized stakeholder mapping meetings with representatives from local non-government and community-based organizations where we used participatory research methods to identify and analyze key stakeholders working with underserved populations.ResultsTwenty six institutions or groups working with the key underserved populations were identified. Insights about the challenges and dynamics of underserved communities were also gathered. Two working groups made up of representatives from the NGO and CBO level were formed.DiscussionUsing the information provided by local key stakeholders to shape the project has helped us to build solid relationships, give the groups a sense of ownership from the early stages, and made the project more context specific. These steps are not only important preliminary steps for participatory studies but also for other research that takes place within the communities.

Abstract A039: Utilizing community-based participatory research to facilitate the conduct of research in a safety-net hospital

Abstract Background: Safety-net hospitals, often in inner-city communities, provide a considerable level of care to low-income, uninsured, Medicare, Medicaid, and vulnerable populations. Establishing and performing research studies at safety-net hospitals may require additional planning due to the protections provided to ensure ethical research and the characteristics of the populations they serve. Community-based participatory research (CBPR) is a partnership approach to research that equitably involves community members, organizational representatives, and academic researchers in all aspects of the research process. The purpose of this study is to 1) report the application of community-based participatory research to develop the capacity to conduct a multilevel qualitative research study focused on minorities' participation in clinical trials in a safety-net hospital, and 2) discuss the lessons learned when planning research studies at safety-net hospital cancer centers. Methods: This qualitative study discusses the implementation of CBPR in the preintervention process of a multilevel qualitative research study within a safety-net hospital cancer center in Atlanta, GA. The seven principles of CBPR guided the structure of project meetings with hospital leadership and administration, process for development of research documents, and obtaining regulatory approval. Findings: Navigating the research approval process in a safety-net hospital and fostering relationships with key hospital leaders and administrators were critical to the initiation of the study. The study followed a university Institutional Review Board (IRB)-approved protocol; however, there were hospital procedures and policies specific to the safety-net hospital that required modifications to the timeline and protocol. In addition to the IRB approval, the study had to undergo a separate approval process by two hospital regulatory boards. The CBPR approach fostered processes that enabled hospital leadership and administrators to contribute their expertise with shared responsibility and ownership. Through CBPR, the academic research team was better able to understand effective strategies for conducting research in a safety-net hospital. Building trust and establishing rapport with hospital leadership and administrators involved a series of meetings, collaboration on community and hospital-based events, transparency by describing the study's purpose, and what knowledge was being generated and how it would be used. Through the CBPR approach, a process was established to feed back the data, jointly interpret the data, disseminate the data, and translate the data into interventions and/or policy. Conclusion: The information provided from this study is beneficial to future studies that partner with safety-net hospital cancer centers. When planning a study, researchers should follow CBPR principles to build trusting relationships with the hospital leadership and administrators. Citation Format: Dexter Cooper, Reagan Durant, Desiree Rivers, Natalie Hernandez, Jennifer Creighton, Brian Rivers, Monica Harris. Utilizing community-based participatory research to facilitate the conduct of research in a safety-net hospital [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A039.

STUDENTS’ LEARNING IN COMMUNITY-BASED PARTICIPATORY RESEARCH: THE POTTED PLANT PROJECT IN PROJECT SOAR

Sharing Opinions and Advice about Research (Project SOAR), funded by PCORI, trained individuals living in under-resourced and underserved communities how to evaluate and provide advice to scientists about recruitment procedures, survey items, and intervention components for implementation in their communities. Moreover, graduate students learned community-based participatory research (CBPR) procedures and interacted with communities in implementing their own research projects. Students worked with the urban Holt community in western Alabama on issues of food insecurity due to pollution and concerns about growing vegetables and herbs in the soil. Students participated in the Potted Plant Project and plant give away, collecting questionnaire and health data. Students reported finding the fluid nature of research during this community event both stressful and rewarding. Students also identified how familiarity with CBPR procedures enhanced their clinical service provision in the community. Discussion will focus on future graduate training needs in implementation of CBPR.

Indigenous Peoples Heath in the United States of America: Review of Lifestyle Issues and the Implementation of Community-Based Participatory Research

The American Indian/ Alaskan Native (AI/AN) population is considered as an “invisible minority” as their health concerns are not addressed equitably compared to other racial/ ethnic minority populations. AI/AN individuals face high rates of nutritional challenges and chronic health conditions including diabetes and cardiovascular disease. The purpose of this paper is to review concerns about AI/AN health disparities and to propose strategies to reduce disparities. This is achieved by reviewing the evidence for health disparities experienced by AI/AN populations. The U.S. government has been working to improve health disparities for AI/AN individuals, through a number of federally run programs. We propose that one important strategy to reduce health disparities is use a community-based participatory research approach (CBPR). Because of the local input, CBPR is a powerful tool for addressing health disparities experienced by AI/AN populations. We further propose that CPBR should be focused on tribal consultation in policymaking, an increase in AI/AN stakeholders, and health disparities in lifestyle issues for AI/ AN people living in urban areas, in addition to reservations.

Indigenizing CBPR: evaluation of a community-based and participatory research process implementation of the Elluam Tungiinun (towards wellness) program in Alaska.

The process that community based participatory research (CBPR) implementation takes in indigenous community contexts has serious implications for health intervention outcomes and sustainability. An evaluation of the Elluam Tungiinun (Towards Wellness) Project aimed to explore the experience of a Yup'ik Alaska Native community engaged within a CBPR process and describe the effects of CBPR process implementation from an indigenous community member perspective. CBPR is acknowledged as an effective strategy for engaging American Indian and Alaska Native communities in research process, but we still know very little about the experience from a local, community member perspective. What are the perceived outcomes of participation in CBPR from a local, community member perspective? Qualitative methods were used to elicit community member perspectives of participation in a CBPR process engaged with one Yup'ik community in southwest Alaska. Results focus on community member perceptions of CBPR implementation, involvement in the process and partnership, ownership of the project with outcomes observed and perceived at the community, family and individual levels, and challenges. A discussion of findings demonstrates how ownership of the intervention arose from a translational and indigenizing process initiated by the community that was supported and enhanced through the implementation of CBPR. Community member perspectives of their participation in the research reveal important process points that stand to contribute meaningfully to implementation science for interventions developed by and for indigenous and other minority and culturally diverse peoples.

Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center

Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers. The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area. We review the process of CBPR in a Deaf ASL community and identify the lessons learned. Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities. This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations.

A Virtue Ethics Guide to Best Practices for Community-Based Participatory Research

Rule ethics, or principled thinking, is important in the analysis of risks and benefits of research and informed consent, but is not completely adequate for guiding ethical responses to communities as research participants and collaborators. Virtue ethics theory can be used to guide actions in relationships, which are foundational to the implementation of community-based participatory research (CBPR). Virtues are strengths of character that contribute to a life of flourishing or well-being for individuals and communities. This article provides an overview of virtue ethics theory, identifies common ethical problems in CBPR, and discusses how professional virtues can be used to guide ethical research practice. The virtues of compassion, courage, honesty, humility, justice, and practical reasoning are defined and applied to ethical practice in the development, implementation, and dissemination of CBPR. Best practices for CBPR that consider the well-being of communities are identified. The virtues of compassion and humility foster inclusiveness and integration of community perspectives in research collaboration. Courage requires researchers to step out of the research safety-net to listen to community member voices and wisdom and share power in research decisions. Honesty requires researchers to communicate realistic expectations for research outcomes, share all findings with the community, and consider community perspectives in research dissemination. Systematic involvement of the community in all steps of the research process represents the virtue of practical reasoning. From a justice perspective, CBPR aims to restore communities rather than take from them.

Challenges in Community-Based Participatory Research Implementation: Experiences in Cancer Prevention with Pacific Northwest American Indian Tribes

Much has been written about community-based participatory research (CBPR) history and principles, but few have addressed challenges in implementation in transcultural situations. The goal of this discussion is to address CBPR implementation issues in cancer prevention research with American Indian tribal communities in the Pacific Northwest. Information in this discussion is drawn from qualitative research conducted over a 10-year period in which CBPR was employed in cancer prevention research with Pacific Northwest Indian tribes. CBPR principles provide the framework for the discussion: establishing trusting relationships, assuring participation, sharing power, and communicating. In this work, we found that CBPR is appropriate for use in Pacific Northwest Indian tribal communities and is compatible with cultural values. We also found that there are many challenges. Recommendations are provided on needed institutional and structural changes. CBPR is an important research approach in addressing cancer prevention health disparities among American Indian tribal communities. Continued effort needs to be directed toward creating systems and structures to support researchers in utilizing this method. Findings are of value to researchers aiming to implement CBPR in Indian communities and to practitioners, policy makers, and administrators who make decisions about CBPR funding and support structures.

Implementing community-based participatory research centers in diverse urban settings.

This issue of the Journal of Urban Health contains descriptions of the implementation of community-based participatory research (CBPR) activities at three Urban Research Centers (URCs) funded through an initiative of the Centers for Disease Control and Prevention (CDC). Now in their sixth year, the URCs have each formed research partnerships among community-based organizations (CBOs), universities, private organizations, and public health agencies. The articles presented here, describing the first 4 years of the development of the URCs, focus on the process of conducting participatory research and include an overview of the urban health issues that are being addressed. Health outcomes will be reported in the future as the URCs analyze findings from their multiple research activities. Here, we document the processes that have become the cornerstones of the activities of the URCs so we can link these processes to health outcomes down the road. The URC-specific reports presented here describe the implementation of CBPR partnerships in the context of urban settings, demonstrating that this approach can be used both to establish new participatory research centers and to guide the transition of traditional research centers to more participatory entities. Our goal is to provide community representatives, public health researchers, and funding agencies with information about how research can be done with equitable opportunities for all partners to contribute. Drawing on the expertise of all partners increases understanding of the factors and processes leading to poor health outcomes and informs the development of interventions to improve community health. We begin by exploring the background of the URCs.