Community-based participatory research: an approach to intervention research with a Native American community

Community-based participatory research (CBPR), with its emphasis on joining with the community as full and equal partners in all phases of the research process, makes it an appealing model for research with vulnerable populations. However, the CBPR approach is not without special challenges relating to ethical, cultural, and scientific issues. In this article, we describe how we managed the challenges we encountered while conducting a CBPR project with a Native American community. We also suggest criteria that will enable evaluation of the project.     

A case study in the use of community-based participatory research in public health nursing

There is growing demand for research using a community-based participatory (CBPR) approach. CBPR requires that the academic research team actively partner with community members and stakeholders in the entire research process. The community members are full partners with the researchers in relation to the development and implementation of the study, analysis of the data, and dissemination of the findings. The purpose of this article is to review four basic principles of CBPR and provide an example of how these CBPR principles were used in an ethnographic study related to the culture of African American infant health. In the pilot study, CBPR provided the framework for recruitment and retention of participants, ongoing data analysis, and dissemination of findings. Using CBPR provided the researchers an introduction into the selected community. Community members served as key informants about the culture of the community and provided access to potential participants. The community partners contributed to analysis of emerging themes and in the dissemination of findings to the community, stakeholders, and the scientific community. CBPR provides opportunities for community health nurse researchers to conduct research with vulnerable populations and sets the stage for implementing evidenced-based nursing interventions in the community.     

Evidence‐Based Advocacy: Using Photovoice to Identify Barriers and Facilitators to Community Participation After Spinal Cord Injury

People with spinal cord injury (SCI) face many environmental barriers to community participation. In this article, a community‐based participatory research (CBPR) project that implemented the Photovoice method with 10 individuals with SCI to gather evidence of the environmental factors affecting their participation in the community in and around Charleston, SC, is described. The specific aim of this project was to use Photovoice to create an evidence base of environmental barriers and facilitators to community participation through analysis of data based on the World Health Organization's International Classification of Functioning, Disability and Health taxonomy of environmental factors. Barriers and facilitators were most frequently photographed in the built environment. The participants have started to share their evidence of issues affecting citizens with disabilities with the public and policy makers. The results of this project illustrate that Photovoice is effective in empowering individuals with SCI to address environmental factors affecting their community participation.     

Community‐Driven Research Agenda to Reduce Health Disparities

This paper describes how a new regional campus of an academic health center engaged in a community‐based participatory research (CBPR) process to set a community‐driven research agenda to address health disparities. The campus is situated among growing Marshallese and Hispanic populations that face significant health disparities. In 2013, with support from the Translational Research Institute, the University of Arkansas for Medical Sciences Northwest began building its research capacity in the region with the goal of developing a community‐driven research agenda for the campus. While many researchers engage in some form of community‐engaged research, using a CBPR process to set the research agenda for an entire campus is unique. Utilizing multiple levels of engagement, three research areas were chosen by the community: (1) chronic disease management and prevention; (2) obesity and physical activity; and (3) access to culturally appropriate healthcare. In only 18 months, the CBPR collaboration had dramatic results. Ten grants and five scholarly articles were collaboratively written and 25 community publications and presentations were disseminated. Nine research projects and health programs were initiated. In addition, many interprofessional educational and service learning objectives were aligned with the community‐driven agenda resulting in practical action to address the needs identified.     

Community analysis for health planning with vulnerable populations

This article describes how advanced practice nurses used a theory-based community health analysis process to examine the healthcare services most needed and used by an adult public housing community and to examine the satisfaction of the community with those services. The goal of the project was to determine if the identified needs would be amenable to an alternative healthcare delivery model, such as an academic nursing clinic. Data were collected using the Health Needs and Health Status Survey, Center for Epidemiological Studies-Depression scale, interactive participant interviews, key informant interviews and observations. Community residents (N = 242) were typically unmarried, middle-aged, and low income and had multiple chronic physical illnesses, serious and persistent mental illnesses, and/or disabilities. Despite the high identified service need, use of preventative or routine healthcare services was low, with residents using emergency services inappropriately or delaying care until requiring more expensive intensive healthcare services.     

Community‐Based Participatory Research Skills and Training Needs in a Sample of Academic Researchers from a Clinical and Translational Science Center in the Northeast

Purpose: To determine the community‐based participatory research (CBPR) training interests and needs of researchers interested in CBPR to inform efforts to build infrastructure for conducting community‐engaged research. Method: A 20‐item survey was completed by 127 academic health researchers at Harvard Medical School, Harvard School of Public Health, and Harvard affiliated hospitals. Results: Slightly more than half of the participants reported current or prior experience with CBPR (58 %). Across all levels of academic involvement, approximately half of the participants with CBPR experience reported lacking skills in research methods and dissemination, with even fewer reporting skills in training of community partners. Regardless of prior CBPR experience, about half of the respondents reported having training needs in funding, partnership development, evaluation, and dissemination of CBPR projects. Among those with CBPR experience, more than one‐third of the participants wanted a mentor in CBPR; however only 19 % were willing to act as a mentor. Conclusions: Despite having experience with CBPR, many respondents did not have the comprehensive package of CBPR skills, reporting a need for training in a variety of CBPR skill sets. Further, the apparent mismatch between the need for mentors and availability in this sample suggests an important area for development. Clin Trans Sci 2012; Volume #: 1–5     

Feasibility of Adolescents to Conduct Community‐Based Participatory Research on Obesity and Diabetes in Rural Appalachia

Community‐Based Participatory Research (CBPR) has been advocated to translate advances in health care sciences to the community. We describe a novel approach applied to obesity management and diabetes prevention. This takes advantage of a network of science clubs organized by the Health Sciences and Technology Academy (HSTA) for extracurricular activity of disadvantaged high school students in rural Appalachia. Physician scientists and educators provided an intensive summer course on CBPR, ethics, and study design on obesity management and diabetes prevention. Ethical certification for CBPR investigation was obtained for 210 students and 18 mentors for a study on the prevalence of obesity and Type II diabetes within their community. Over a 6‐month period, 989 had a collection of complete analyzable data, of which 103 had diabetes. The proportion with obesity (BMI ≥ 30) was over 50%. The frequency of diabetes was related to increasing BMI. When BMI ≥ 40, the frequency approached 50%, and exhibited a clear familial distribution. We conclude that trained adolescents can effectively conduct CBPR, and obesity and diabetes are more prevalent than previously reported in this community. This experience provides encouragement to conduct future studies to infl uence weight management from high‐risk populations in this medically disadvantaged community.     

Facilitating research faculty participation in CBPR: development of a model based on key informant interviews

Community-based participatory research (CBPR) may enhance the translational research process; however, this would require increased institutional capacity for community engaged research. In this paper, we fi rst present results of key informant interviews with academic health center faculty regarding facilitators to faculty participation in CBPR partnerships and then propose a model arising from these results describing how increased capacity may be achieved. Participants were 13 key informant faculty of varying levels of expertise in CBPR at a large university academic health center. Interviews were recorded and transcribed. A thematic content analysis of each interview was conducted by research team members. Facilitators reported by faculty representing fi ve health science schools were grouped into fi ve thematic areas: (1) researcher personal attributes including an innate orientation toward working with community, (2) positive attitudes toward collaboration, (3) a partnership-building skill set, (4) community partners who are ready and eager to collaborate, and (5) supportive institutional policies and procedures. We propose a model describing the relationship between personal attributes, learned/environmental factors, and community facilitators that may be utilized to promote increased institutional capacity for CBPR and thus increase the likelihood of the successful translation of research findings into community settings.     

Linking service-learning with community-based participatory research: an interprofessional course for health professional students

Service-learning is a valued strategy for educating health professionals. Linking service-learning with community-based participatory research (CBPR) engages students with community stakeholders and faculty in a collaborative process to bring about social change and improved health. The purpose of this paper is to describe a strategy for involving interprofessional students in ongoing faculty CBPR in an underserved community. The process includes the design and implementation of a course that combines weekly seminars with field experiences in the targeted community, emphasizing community assessment, and working with community members to find solutions to health problems. Nursing, public health, and medical students were recruited to the initial course, and offered the opportunity to meet objectives of required components of their disciplinary curriculum. Community members became actively involved in educating students while working to solve identified health problems. Important principles of CBPR—trust, collaboration, excellence in science, and ethics— are emphasized throughout the initiative. This course is now a regular offering for interprofessional students, providing valuable learning experiences for students, faculty, and the community. Ongoing faculty CBPR continues a trusting community-academic relationship and gives the community a voice in the solution for health problems.     

Getting started in CBPR: lessons in building community partnerships for new researchers

There is a growing interest in community-based participatory research (CBPR) methods to address issues of health disparities. Although the success of CBPR is dependent upon the formation of community-researcher partnerships, new researchers as well as seasoned investigators who are transitioning to CBPR often lack the skills needed to develop and maintain these partnerships. The purpose of the article is to discuss the competencies needed by new researchers to form successful CBPR partnerships. The author presents a series of strategic steps that are useful in establishing academic-community partnerships and in initiating, maintaining and sustaining CBPR projects. These steps include suggestions regarding community engagement, selection of community advisory board members, outreach, the community's role in problem identification, selection of research methodologies, considerations related to the community setting, need for flexibility and patience, 'insider vs. outsider' conflicts, commitment and training issues, timing concerns for tenure-track faculty and the process of community empowerment. Community-based participatory research is both rewarding and time consuming, for both the researcher and members of the community. Given its promise to address health disparities, it is imperative that researchers acquire the skills needed to develop and cultivate durable community-researcher partnerships.     

Preventing caries in preschoolers: Successful initiation of an innovative community-based clinical trial in Navajo Nation Head Start

Navajo Nation children have the greatest prevalence of early childhood caries in the United States. This protocol describes an innovative combination of community-based participatory research and clinical trial methods to rigorously test a lay native Community Oral Health Specialists-delivered oral health intervention, with the goal of reducing the progression of disease and improving family knowledge and behaviors.Methods/DesignThis cluster-randomized trial designed by researchers at the Center for Native Oral Health Research at the University of Colorado in conjunction with members of the Navajo Nation community compares outcomes between the manualized 2-year oral health fluoride varnish-oral health promotion intervention and usual care in the community (child–caregiver dyads from 26 Head Start classrooms in each study arm; total of 1016 dyads). Outcome assessment includes annual dental screening and an annual caregiver survey of knowledge, attitudes and behaviors; collection of cost data will support cost–benefit analyses.DiscussionThe study protocol meets all standards required of randomized clinical trials. Aligned with principles of community-based participatory research, extended interaction between members of the Navajo community and researchers preceded study initiation, and collaboration between project staff and a wide variety of community members informed the study design and implementation. We believe that the benefits of adding CBPR methods to those of randomized clinical studies outweigh the barriers and constraints, especially in studies of health disparities and in challenging settings. When done well, this innovative mix of methods will increase the likelihood of valid results that communities can use.     

Academic partnerships and key leaders emerging from communities in the lower Mississippi Delta (LMD): a community-based participatory research model

Collaboratively, the nutritional health problems of the Lower Mississippi Delta (LMD) region were examined and opportunities identified for conducting research interventions. To combat the nutritional health problems in the LMD, community residents yielded to a more comprehensive and participatory approach known as community-based participatory research (CBPR). Community residents partnered with academic researchers and other organizational entities to improve the overall quality of diet and health in their respective communities using CBPR. The collaborative work in the LMD focused on interventions conducted in each of three specific communities across three states: Marvell, Arkansas (Marvell NIRI), and its surrounding public school district; Franklin Parish in Louisiana (Franklin NIRI); and the city of Hollandale, Mississippi (Hollandale NIRI). This paper examined some of the research interventions conducted in Franklin, Hollandale, and Marvell NIRI respectively, how leadership emerged from each of these communities, and lessons learned as a result of the CBPR model.     

Team process in community-based participatory research on maternity care in the Dominican Republic

A cross-cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery community-based participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. The purpose of the study was to understand community perceptions of maternity services. This article highlights the activities that the research team carried out during each phase of the research process, and how they established team identity, team trust, and team efficacy. This research has created a platform for new avenues for health providers and community to partner to improve maternal-newborn care. Community-based participatory research is one way forward to address the past and present inequities constitutive of global health disparities.     

Finding middle ground: negotiating university and tribal community interests in community-based participatory research

Community-based participatory research (CBPR) has been hailed as an alternative approach to one-sided research endeavors that have traditionally been conducted on communities as opposed to with them. Although CBPR engenders numerous relationship strengths, through its emphasis on co-sharing, mutual benefit, and community capacity building, it is often challenging as well. In this article, we describe some of the challenges of implementing CBPR in a research project designed to prevent cardiovascular disease among an indigenous community in the Pacific Northwest of the United States and how we addressed them. Specifically, we highlight the process of collaboratively constructing a Research Protocol/Data Sharing Agreement and qualitative interview guide that addressed the concerns of both university and tribal community constituents. Establishing these two items was a process of negotiation that required: (i) balancing of individual, occupational, research, and community interests; (ii) definition of terminology (e.g., ownership of data); and (iii) extensive consideration of how to best protect research participants. Finding middle ground in CBPR requires research partners to examine and articulate their own assumptions and expectations, and nurture a relationship based on compromise to effectively meet the needs of each group.     

Community-based participatory research and the challenges of qualitative analysis enacted by lay, nurse, and academic researchers

There are multiple challenges in adhering to the principles of community‐based participatory research (CBPR), especially when there is a wide range of academic preparation within the research team. This is particularly evident in the analysis phase of qualitative research. We describe the process of conducting qualitative analysis of data on community perceptions of public maternity care in the Dominican Republic, in a cross‐cultural, CBPR study. Analysis advanced through a process of experiential and conversational learning. Community involvement in analysis provided lay researchers an imperative for improvements in maternity care, nurses a new perspective about humanized care, and academic researchers a deeper understanding of how to create the conditions to enable conversational learning. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:550–559, 2012     

Improving primary health care for people with learning disabilities

'Signposts for Success' (Department of Health (DoH), 1998a) states that specialist learning disability services (SpLDS) must promote liaisons with, and offer specialist advice to, primary healthcare teams (PHCTs). With the advent primary care groups (DoH, 1998b), genuine collaboration and partnership-forging is necessary and timely to prevent people with learning disabilities being excluded from healthcare services. The project described in the article had three broad aims: first, to establish a practice register of people with learning disabilities in all practices involved in the project; second, to enable practice nurses (PNs), with support, to carry out a systematic health check within the practice of people with learning disabilities; and third, to enable the project nurse to act as a crucial link between SpLDS and the PHCT. The health checks highlighted unmet health and social needs, which were then met through appropriate referral and intervention, mainly to specialist services. Follow ups were conducted to measure any health gain as a result of the applied Interventions. Evidence of health gain was revealed, pointing to the clinical effectiveness of performing such checks within the PHCTs.     

Sharing of Grant Funds between Academic Institutions and -Community Partners in Community‐Based Participatory Research

Objectives

To determine how grant funds are shared between academic institutions and community partners in community‐based participatory research (CBPR).

Methods

Review of all 62 investigator‐initiated R01 CBPR grants funded by the National Institutes of Health from January 2005 to August 2012. Using prespecified criteria, two reviewers independently categorized each budget item as being for an academic institution or a community partner. A third reviewer helped resolve any discrepancies.

Results

Among 49 evaluable grants, 68% of all grant funds were for academic institutions and 30% were for community partners. For 2% of funds, it was unclear whether they were for academic institutions or for community partners. Community partners’ share of funds was highest in the categories of other direct costs (62%) and other personnel (48%) and lowest in the categories of equipment (1%) and indirect costs (7%).

Conclusions

A majority of CBPR grant funds are allocated to academic institutions. In order to enhance the share that community partners receive, funders may wish to specify a minimum proportion of grant funds that should be allocated to community partners in CBPR projects.