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What are some of the challenges inherent in CBPR?

Principles of Community-Based Participatory Research

“Community-based participatory research is a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.”1

n this chapter, I will provide an overview of community-based participatory research (CBPR) and accomplish the following objectives:

• Review the principles and foundations of CBPR • Discuss the rationale for involvement in CBPR and when to use it (why bother?) • Introduce cases in which CBPR was used to investigate

Policy issues Urgent health crises Health disparities

• Compare CBPR with traditional research • Describe the strengths and weaknesses of a CBPR approach

OVERVIEW OF COMMUNITY-BASED PARTICIPATORY RESEARCH

As is so often the case in community health practice, a problem is met head on with a solution. Unfortunately, while the solution represents a response to an urgent identified need, it often lacks an evidence base. We recognize that research- based innovations make their way slowly, if at all, into community practice.2, 3 This has been documented extensively in the literature with regard to health in particular and speaks to the breakdown between academic and community- based practitioners. How can we speed the uptake of evidence into community practice? How can we identify the appropriate community-relevant research questions? How can we break down the barriers between researchers and community partners? How can communities translate their own practice-based evidence for consumption by the research community? There is a great deal of current interest in strategies to improve the rapidity of the translational research process.4 Engaging the community may be one way to bridge the gap between science and practice.

Community-engaged research (CeNR) exists on a continuum ranging from research in the community setting to research that fully engages community partners. CBPR represents one end of this CeNR spectrum (Figure 1.1). The CBPR approach encourages engagement and full participation of community partners in every aspect of the research process from question identification to analysis and dissemination.

The goal of CBPR is to create an effective translational process that will increase bidirectional connections between academics and the communities that they study. This approach is not limited to specific disciplines but can be utilized whenever conducting community research. CBPR hinges on the relationship between the researcher and the community under study. The equitable aspects of the partnership and the participatory nature of the work differentiates CBPR from other traditional research approaches. In addition, in CBPR, there is a close linkage between the academic pursuit of generalizable knowledge and the use of that knowledge for action at the local level. Thus the practice of CBPR takes a somewhat different track than that of traditional research. Throughout this chapter, I will focus on the rationale for CBPR, the principles, and the strengths and weaknesses of the approach in order to prepare the investigator to engage in CBPR projects.

Figure 1.1 Community-Engaged Research Continuum

Source: Virginia Commonwealth University Center for Clinical and Translational Research 2008 (Looking at CBPR Through the Lens of the IRB. Cornelia Ramsey, PhD, MSPH Community Research Liaison, Center for Clinical and Translational Research, Division of Community Engagement, Department of Epidemiology & Community Health) http://www.research.vcu.edu/irb/Looking-at-CBPR-Through-the-Lens-of- the-IRB.ppt

Historically, research involving communities has not always included community partners in a participatory manner. Rather, research may be done in communities or on community residents, using the community as a laboratory. As a result, members of underserved communities often have negative perceptions of research and may feel exploited by investigators who conduct research, depart, and leave nothing behind. The worst-case scenarios such as the Tuskegee experiment have left many community members, particularly those of color, feeling distrustful and reluctant to participate in research.5 Thus, research that may improve health and other outcomes may not include populations at highest risk or result in action or sustainable change at the community level.

In order to improve the relevancy and acceptability of research to communities and break down translational barriers, community members are increasingly demanding equality in the development and conduct of research. In addition, they are interested in shared ownership of the resulting data and in the application of results to action in practice or policy. In short, they want to have their voices heard and to participate in shaping the topics for study, identifying the emergent questions, and conducting investigations into the issues that are meaningful to their communities. They want to be part of the research team and see that the results are utilized to remedy problems at the community level.

Changing the research paradigm to include community members in a participatory manner requires a new approach that includes the formation of equitable partnerships between academia and community members in which there is mutual respect and both parties contribute and benefit. Thus, the goal of the CBPR approach is to produce research that is relevant to the life circumstances of communities and the people who reside within them.6 When embraced by community partners as a shared endeavor, CBPR has the potential to catalyze actionable health improvement in real time.

THE FOUNDATIONS OF CBPR

CBPR is only recently finding its way into the biomedical literature. However, it has been previously used in a variety of disciplines ranging from anthropology to education and psychology. Sometimes called “action research,” “participatory research,” “participatory action research,”7 or even “street science,”8 it has been used to examine environmental health issues, educational strategies, and international health issues.9 These “participatory research” approaches share a core philosophy of inclusivity and of engaging the beneficiaries of research in the research process itself.10 Similarly, CBPR is built on a foundation of social justice and empowerment, with its roots in feminist theory and community organizing. Feminist theory focuses on the historical and cultural oppression of women and drives toward gender equality and empowerment.11 Community organizing purports that individuals together can make a difference in their own communities through group action.12, 13 Both of these theories recognize that empowerment of the oppressed can result in community action for social change.

Two distinct traditions—that of Kurt Lewin, who coined the term action research, and that of Paulo Freire, who developed “emancipator research”—stand out as having influenced CBPR. Kurt Lewin in the 1940s was one of the first to use the term action research. Lewin sought to solve practical problems using a research cycle that involved planning, action, and investigation of the results of action.7, 14 This iterative process paired the researcher with community members as partners in the investigative process. In 1970, Paulo Freire, the Brazilian educator, changed the power

dynamics in research by depicting the researcher as facilitator and catalyst rather than director in his book, Pedagogy of the Oppressed.15 As Freire noted, knowledge is connected to power—but whose power? Knowledge does not only emanate from academia; rather, “people” also create and possess knowledge. This perspective shifts the concept of research from one in which the community is a laboratory for investigation to one in which community members not only participle in the inquiry process but also contribute their own knowledge. Freire framed the concept of “popular education” and argued that the teacher must be open to learning from the student. This colearning process based on emancipator conceptions has greatly influenced the use of CBPR approaches.7

In CBPR, the basic tenets of this participatory approach assume that there is knowledge and benefit in the shared partnership between academia and community. In Street Science, Corburn delineates where the power lies in the production of knowledge and highlights the value of local knowledge as an important component of the research process. In his examples, community members are the first to identify the question for study, and researchers are called to assist in solving real-world, practical problems8 (Table 1.1).

Today, many view the CBPR process as iterative, similar to that described by Lewin. This allows the academic/community partnership to utilize data, refine programs, and ask additional questions. This is not unlike the Plan Do Study Act Cycle (PDSA) used in quality improvement (Figure 1.2). The systematic collection of data provides the community with opportunities for reflection, adjustment, and improvement in real time. CBPR offers access to data and skill sets that support this process. For example, in the following Everett example, community members observed an issue in their community that they wanted to address. Their question—Was the presence of Immigration and Customs Enforcement (ICE) impacting the health of the immigrant community?—required additional data. While they lacked the skills to conduct the investigation, they possessed an extensive knowledge of the community context, and they were invested in participating in the data collection, interpretation, and its ultimate use to shape local policy.

Table 1.1 “Street Science”: Where Is the Power in Knowledge Production?

Knowledge Production Local Knowledge Professional Knowledge Who holds it? Members of community—often identity

group/place specific Members of a profession, university, industry, government agency

How is it acquired? Experience; interpersonal communication; cultural tradition

Experimental; epidemiologic; systematic data collection

What makes evidence credible?

Evidence of one’s eyes, experience; personal communications

Often instrumentally mediated; statistical significance; legal standard

Forums where it is tested?

Public narratives; community stories, media Peer review; courts; media

Source: Corburn, Jason., Street Science: Community Knowledge and Environmental Health Justice, Table 2.1, page 52, © 2005 Massachusetts Institute of Technology, by permission of The MIT Press.

Figure 1.2 Research for Process Improvement

Source: Reproduced by permission from the Institute for Community Health, Cambridge, MA; 2011.

Example 1: Immigration: CBPR and Local Policy

In the last 20 years, Everett, Massachusetts, has seen an influx of immigrants coming from countries such as Brazil, Haiti, Guatemala, and Morocco. Everett is a small city of about 37,000 people with affordable rents and proximity to Boston. While there have been tensions in the community about issues related to immigration, such as housing and parking, it is only recently that the increased activity of Immigration and Customs Enforcement (ICE) has created challenges for the immigrant community. In particular, with increases in deportation and detention, immigrants fear that they will be picked up by authorities and deported. Stories of immigrants missing health appointments because ICE was in the vicinity or having stress-related conditions such as sleeplessness, headaches, and weight loss are common. These concerns were raised by various immigrant advocacy groups and Everett community leaders to institutional leaders. To facilitate changes in local policy, evidence was needed to support advocacy efforts and bring attention to the issue. So they approached a familiar academic partner to join them in an investigation of the problem, “the impact of ICE activity on immigrant health.” Their goal was to learn more about the issue and solve the problem by developing a policy or programmatic intervention that would alleviate some of the stress that immigrants were experiencing.16

In the Everett CBPR project, the process started with a question that came from prior experience and community discourse. Community members wanted to validate their suspicions through rigorous methodology. Members approached a local researcher to assist them in their investigation, thus expanding their own skill sets. They were engaged in every step of the research process, including data collection. They ultimately took the results to action. Today, they are using the research for process-improvement cycles, asking additional questions, and sorting through methods with their academic partners to pursue new research projects.

WHY BOTHER USING CBPR?

What are the forces driving us toward a CBPR approach? Today, as noted, there is an emerging realization that we must improve clinical translational research in order to improve human health.17 CBPR holds promise as a strategy that would help to improve this process. Second, in the United States and abroad, we continue to have gross disparities in

health outcomes. Minority racial/ethnic populations suffer disproportionately from many chronic disease conditions, and social determinants of health are heavily contributing to these disparities. Strategies for addressing these disparities require approaches that engage those most impacted in design and implementation. CBPR represents a promising approach to address these issues, as it relies on the community’s self-determination of the research agenda and redistributes institutional resources into marginalized communities toward community benefit.18

There is also pressure from community partners who want to participate actively in research that involves them. They no longer want to be “laboratories” for research but, rather, they want to have access to data, solve their own local health and social issues, and drive policy. Community members want to conduct and participate in their own research endeavors. A CBPR approach validates this desire by not only including community members in all aspects of the research but also by building their capacity to lead and contribute to research projects. Simultaneously, it helps to build the capacity of academics to understand community context and improve the relevancy of their research. This colearning process is an important outcome of the CBPR approach.

WHEN TO USE CBPR

A CBPR approach may be particularly useful for emergent problems for which community partners are in search of solutions but evidence is lacking. CBPR can be helpful in completing rapid assessments and as a strategy to engage hard-to-reach populations who may be less inclined to participate in research. And CBPR is exceptionally helpful in the formative phases of research when little is known about a topic area. CBPR helps academics understand the community perspective as they develop research questions and hypotheses together. Community partners can deepen the interpretation process once results are available, as they are intimately familiar with the context and meaning. Alternatively, CBPR is less likely to be helpful for study designs that require highly controlled methodology, as the participatory nature of the work tends to require flexibility and adaptation as part of the research process.

CBPR can be used when a specific issue emerges from the community and research partners are needed to rigorously assess the evidence and provide data. For example, CBPR has been used effectively for the study of environmental health issues. In some cases, CBPR is part of a real-time situation that demands answers and action. In others, it provides an important approach for understanding issues of vulnerable populations.

Example 2: Somerville: CBPR and Youth Suicide: Real-Time Health Crisis

Somerville, Massachusetts, is an urban city of 70,000 people that borders Cambridge. Historically, Somerville has been home to working-class populations, and in recent years, between gentrification and new immigration, the city demography has changed substantially. Somerville has also been affected by long-term substance abuse problems, especially heroin and alcohol. In 2001, a young person took his own life, and this was followed soon after by oxycodone overdoses of two high school students. A local researcher with an interest and experience in adolescent suicide was concerned that this might represent the beginning of a suicide cluster. She had prior relationships with community partners and so approached the Health Department director and mayor to discuss her concerns and interest.

Loss of youth life to suicide and overdose sends enormous ripples of concern through any community, and in Somerville, the Health and School Departments examined data from their biannual teen health survey to determine if suicidal behaviors had changed. The teen survey noted that 21% of the students had seriously considered suicide, and 14% had attempted suicide during the last 12 months. This was substantially elevated over previous years and higher than the state average overall.

In order to respond to the situation and investigate further, the mayor convened several task forces and asked the researcher to join with community members and colead one of the task forces along with the Health Department director. Other members included representation from the schools, the police, and community members as well as additional experts in suicide clusters. The questions posed by the community to the researcher were these:

• Was this suicide and overdose activity significantly elevated from baseline? • Were there common links between victims and was this a contagion/cluster?

The overall aim of the partnership was to identify potential causes and strategies for action. In addition, the group wanted to establish a sustainable system that would effectively address the problem of suicide or additional crises in the long term.19

CBPR has also been used extensively to understand and explore health care disparities.20 As per Dr. Wallerstein, CBPR has enhanced the effectiveness of interventions by integrating culturally based evidence and internal validity. In the following example, while the research question focused on disparities did not specifically come from the

community, its application and acceptance were clearly driven by the perspectives of the community partners. And the ability to negotiate the investigation was grounded in a long-term academic/community partnership.

Example 3: BMI Disparities in Cambridge, Massachusetts

In Cambridge, Massachusetts, over a 10-year period, a coalition of school staff, public health personnel, and local researchers had been tracking childhood indicators of obesity. Using annual height and weight measurements of children that had been reported for many years, one researcher noted that there were glaring disparities in childhood obesity among racial/ethnic groups.2 Blacks and Hispanics were carrying an undue burden of obesity. The researcher approached a long-time community colleague, and together they began to discuss the issue with other community members. The community colleague provided entrée to a social network of African American leaders and community members and helped engage them in conversation and the research process. Thus, the CBPR partnership expanded to include other members of the community, particularly the minority community, who came together to examine why disparities in obesity rates persisted even when general trends were declining (Source: Virginia R. Chomitz, Ph.D., Tufts Medical School).

In this example, a CBPR approach provided inroads into important community voices that could lend meaning to the disparities identified. Without their understanding of the issue and participation in the research process, it would be unlikely that findings would be either relevant or valid for the population of concern.

PRINCIPLES OF CBPR

The three examples described thus far illustrate many of the important principles of CBPR put forth by Dr. Barbara Israel and colleagues at the University of Michigan.21 They are discussed below and described in greater detail elsewhere.21, 22

CBPR Acknowledges Community as a Unit of Identity

Understanding and identifying “the community” for the purposes of CBPR projects is an important first step in the CBPR process. Communities are made up of people linked by social ties who share common perspectives or interests and may also share a geographic location.23 In our Everett example, the community was identified as “immigrants—documented and un-documented—living in Everett” and included the various community agencies (churches, immigrant advocacy groups, health and school departments, community organizations) that supported them. In our Somerville example, the community was identified as youth and youth-serving agencies throughout the city of Somerville. In our Cambridge example, the African American community was the focus.

CBPR Builds on Strengths and Resources Within the Community

In CBPR, the community as represented by its members, is a participant in the process and brings a variety of skill sets that are different than but equally as valuable as academic skills. Corburn refers to this knowledge as “street knowledge.”8 A community store owner, a pastor, a schoolteacher, a community member living in low-income housing understands community needs and the realities of daily life far better than a researcher does. In addition, the strengths of a given community can be brought to bear to implement solutions once identified. This offers the potential for sustainable change. As the action arm of CBPR, the community and its strengths play a particularly important role in carrying forward lessons learned. In all three of our examples, the community partners had a multiplicity of skill sets and “street knowledge” that was critical to the CBPR process. In Everett, community partners brought their extensive knowledge of the immigrant groups, including language skills and cultural experience. In Somerville, partners knew the history of the community and had intimate knowledge of the families who lost their children to substance abuse and suicide. In Cambridge, community partners provided access to diverse community members and leaders. In all three communities, the connections and social networks that community partners provided were the only avenues for academics to gain access to the population at risk and to understand the aftermath of losses. In addition, in all cases, community partners had the political and resource access necessary to ultimately translate findings into action.

CBPR Facilitates a Collaborative, Equitable Partnership in All Phases of Research, Involving an Empowering and Power-Sharing Process That Attends to Social Inequalities

CBPR hinges on the academic/community partnerships that are formed.24 These partnerships are built on mutual respect and trust. Academics should recognize the inherent inequities that exist between community members and academics and try to address them via transparency, communication, shared decision making, and appropriate

allocation of resources. In our examples, new partnerships were built on existing partnerships with a known researcher. The trust had, to some extent, already been built, thus opening the door for future projects. When the need arose, community partners were able to activate the partnership and participate from the beginning in all phases of the research, from identification of the problem to decisions about the methods and data collection.

CBPR Fosters Colearning and Capacity Building Among All Partners

One of the outcomes of a CBPR approach is the colearning that takes place by both community members and academics. As the academic learns of the community realities and the meaning of interactions from community members, so too the community members gain competencies in data use, critical thinking, and evaluation. All of this builds mutual capacity that will translate to other projects and enrich an understanding of community issues. As an example, in Everett, community partners identified the lack of driver’s licenses as a major intervening factor in the relationship between ICE and immigrant health. That is, when an immigrant was stopped by police, the lack of a license led to arrest, and regardless of realities, immigrants believed that arrest by local police could lead to deportation. This was not something that the researchers were aware of. Similarly, the researchers actively educated the community partners on subjects ranging from how to develop a hypothesis to how to conduct focus groups.

CBPR Integrates and Achieves a Balance Between Knowledge Generation and Intervention for the Mutual Benefit of All Partners

CBPR is nested in real-world issues, and the relevant problems of interest demand action. Balancing the demands of community action with the needs of research can be challenging. Pacing may differ, analytic methods may clash, and dissemination efforts may conflict. When the CBPR process works best, it can satisfy both needs. These issues should be discussed up front and frequently throughout the process so that difficult issues can be effectively navigated. In our Somerville example, in the midst of a crisis, community members wanted and demanded action. Researchers provided information on existing evidence-based practices for their adoption, including the Centers for Disease Control and Prevention (CDC) recommendations. They also were instrumental in collecting and mapping data in an ongoing manner. In this case, knowledge generation and interventions were happening simultaneously, and while the balance was achieved to some extent, it was necessary to prioritize action given the urgency of the situation.

CBPR Focuses on the Local Relevance of Public Health Problems and on Ecological Perspectives That Attend to the Multiple Determinants of Health

The problems explored in CBPR studies are generally of great relevance to the communities involved. As such, CBPR necessarily will involve the “social determinants” as important factors to be considered and explored.

The examples offered were not only relevant to community public health problems but also took a larger perspective, recognizing that the external conditions had much to do with the issues under study. These types of projects demand multidisciplinary teams of community members and scientists. In Everett, we worked with lawyers, demographers, and physicians as well as immigrant leaders, clergy, and local government officials, all of whom contributed their knowledge to the process.

CBPR Involves Systems Development Using a Cyclical and Iterative Process

CBPR is often perceived as a cyclical process involving numerous phases from question development to data collection and analysis. As with the quality-improvement cycles used in health care improvement and business (Plan Do Study Act), the process often opens the door to new and emerging questions, which in turn requires an investigative process.

In all of our examples, initial data collection and analysis sparked new lines of inquiry. As data became available during the suicide crisis, community members sought to explore and answer these new questions: that is, were these suicides related to drug use? In addition, they used the data to refine their interventions, including educational efforts and outreach to subpopulations within the community. In the Cambridge example, data that had been collected over time (BMI data) focused on the entire school-aged population, but further examination of this data sparked a whole new line of inquiry: that of disparities in obesity rates.

CBPR Disseminates Results to All Partners and Involves Them in the Wider Dissemination of Results

The dissemination process in CBPR is somewhat different than that typically used in traditional research endeavors. Dissemination needs to benefit all parties and means different things to academics than it does to community partners. For example, dissemination from a community perspective may require different formats and venues than the peer- reviewed journal. In addition, the time sequencing may be different, as there is often a more rapid demand for results at the community level than in academic realms. Thus, negotiating types of dissemination and what can be disseminated

when, is an important element in CBPR work. In Everett, dissemination took the form of a community forum that presented the data back to members of the affected community for their consideration. In Somerville, dissemination was happening in an ongoing manner throughout the project. However, ultimately, all the partners were involved in developing a final synopsis of the work. This ended up as a peer-reviewed paper aimed at providing information for other communities that might encounter similar events.19 Similarly, in Cambridge, the data were used both for a report to the community and the advisory group and for a peer-reviewed paper.

CBPR Involves a Long-Term Process and Commitment to Sustainability

To fully engage in CBPR, the researcher needs to consider the time involved for specific projects but also to nurture relationships outside of projects. How do researchers get to know their partners? How much time is spent in the community at nonwork events? Do they make the long-term commitment to improving the community situation, or is this a “one-shot” research project? In order to establish the trust needed to fully engage in CBPR, a long-term commitment will likely extend beyond the specific project to other worthy projects that partners feel are appropriate.

CBPR VS. TRADITIONAL RESEARCH

CBPR changes the power dynamics inherent in traditional research. Researchers are typically seen as the experts and in possession of knowledge. In CBPR, the community members possess knowledge and are experts in community context, norms, and issues. CBPR attempts to establish equitable partnerships with mutual responsibility. This is in direct contrast to more traditional forms of research (Table 1.2) in which the investigator leads and is responsible for both the conduct and outcomes of the process. For example, where traditional research identifies the question of interest, in CBPR, community partners are the initiators of the research question.

Table 1.2 Differences Between Traditional Research and Community-Engaged Research

Community-Engaged Research Traditional research approach Research with the community Community-based participatory research

approach Researcher defines problem Research IN the community or WITH the

community Community identifies problem or works with researcher to identify the problem

Research IN or ON the community

Research WITHcommunity as partner Research WITH community as full partner

People as subjects People as participants People as participants and collaborators Community organizations may assist

Community organizations may help recruit participants and serve on advisory board

Community organizations are partners with researchers

Researchers gain skills and knowledge

Researchers gain skills and knowledge, some awareness of helping community develop skills

Researcher and community work together to help build community capacity

Researchers control process, resources, and data interpretation

Researchers control research; community representatives may help make minor decisions

Researcher and community share control equally

Researchers own data and control use and dissemination

Researchers own the data and decide how they will be used and disseminated

Data are shared, researchers and community decide how they will be used and disseminated

Source: From “Practicing Community Engaged Research,” © 2007 by Mary Anne McDonald, MA, DrPH. Duke Center for Community Research, Dept of Community and Family Medicine, Duke University Medical Center, Durham, NC 27710. Adapted from Community Campus Partnerships for Health online curriculum: Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill Building Curriculum (http://www.ccph.info/)

Whether initiators or collaborators, the study question will need to be of interest to both the researcher and the community partners. Concepts of collaboration, equity, power sharing, and consensus are all elemental to CBPR. Research with rather than on the community is the focus, and the participatory nature of the process requires investigators to be attuned to the perspectives of community partners. These differences in approach are well illustrated

in our examples, where community partners and researchers were engaged in a partnership to address the research questions.

STRENGTHS AND WEAKNESSES OF CBPR

Now that you are familiar with the “what” and “why” of CBPR, it is important to also understand the strengths and limitations of this approach (Table 1.3). CBPR is likely to facilitate more relevant research given its community- embedded nature. Community input may reveal information that would have been otherwise undiscovered and that potentially greatly enhances the research process and the results. This additional value encourages community ownership and may support sustainability. CBPR also helps build community and researcher capacity to understand and utilize data and to think critically about impact and outcomes. For example, in Everett, the findings from the immigrant study were used to establish police/immigrant dialogue and change local policy related to traffic stops. Local police no longer arrested people for lacking driver’s licenses but, rather, issued citations instead, which substantially decreased fear in the immigrant community. The acquisition of new skills and access to resources for community partners are also benefits of the CBPR process. In Somerville, community members learned mapping techniques and continued to monitor 911 data on overdoses and suicide as part of health department responsibilities. CBPR is also likely to improve participation and retention in studies, particularly for populations that are unlikely to be involved in research. This was certainly true in the Everett study, in which more than half the participants in the study were undocumented immigrants. Other studies have identified recruitment and retention as major benefits of CBPR, particularly important for research on disparities.1

As partnerships deepen, CBPR may effectively blur the separation between academic researchers and community partners. Members of marginalized communities embark on an investigative process to understand their own circumstances through the systematic collection of data. They become researchers themselves. So, too, as the researchers engage in CBPR, they will gain a whole new set of skills that stems from their understanding of appropriate language, methods, meaning, and context. These skills and enhanced knowledge of community needs and assets will lead to improved validity and value of their projects. It is this transformative process that builds colearning and mutual respect within the partnership.

Table 1.3 Strengths and Weaknesses of a CBPR Approach

Strengths Weaknesses Relevancy to local community (authenticity) Time needed to form partnerships Community ownership Potential loss of control Builds local capacity and community skills May not be generalizable (external validity) Builds researcher skills Requires flexibility given changes in contextual factors Builds trust and bridges community academic barriers Time frames for reporting results may differ Supports social action Conflict between partners on dissemination, strategies,

decisions Imparts in-depth knowledge of community context, needs, and assets

May impact method choice

Deepens interpretation of results May not be valued in academic environment Results directly used for sustainable changes

However, CBPR also has it challenges. A major weakness from a researcher perspective is that CBPR takes time: time to build relationships with partners, time to manage a participatory group, and time beyond specific projects to maintain partnerships.25 This is unlikely to be compensated by academic institutions. In addition, given that the contextual environment is constantly changing, there may be difficulties maintaining partnerships as priorities shift and personnel change within the community. For example, if you are working with a mayor and local leadership and the mayor loses an election, you may be faced with developing new partnerships with different leaders to continue the work.

A participatory approach also requires an academic partner to be flexible, creative, and able to facilitate group processes. Given that decision making is shared and plans may change, these attributes are important in the conduct of CBPR. For example, should a new issue emerge in the community under study, it may be hard to maintain focus on the

research initiative, as partners may divert their attention elsewhere. You may be working on asthma-related environmental issues when a local leader becomes a victim of violence. In response, the community members turn their attention toward the new, pressing issue, which takes precedent. This forces an unexpected slowdown in the project.

The participatory process also forces potential compromises in research design. For example, the researcher may want the strongest design, such as randomization of participants to test an educational intervention, but community partners feel that they do not want to limit access to any new educational resource regardless of whether it is proven effective. Randomization may therefore be considered unethical in a school environment. In another situation, community partners may be concerned that implementing a research protocol in a busy youth program does not work well with the delivery of service. They may restrict access to clients or limit the amount of information that can be obtained. Overall, given that decision making is shared, research design must be negotiated and determined feasible by the community under investigation.

One of the major issues raised regarding CBPR is that given its local focus, can it be generalizable to other environments? That is, do CBPR studies have sufficient external validity?20 While CBPR tends to be used at the local level, generalizable validity (external validity) is dependent on how conclusions drawn from one community can be translated to other communities. Much of this question is dependent on how well the investigators were able to limit bias, on how “comparable” other communities might actually be, and most importantly, on how well community partners are able to adapt the research to meet their needs and unique assets. Each community exists in a frame of contextual variables that can range from population demographics to a host of contextual factors, including local politics, regulations, physical environment, and so on. These make it difficult to strictly transfer the knowledge learned in one community to others. While achieving external validity is challenging in CBPR, it can be done, and I will address methods in a later chapter.

The CBPR process also requires negotiation and compromise. Researchers must develop listening skills. Data and results are products of a shared enterprise, which requires an agreed upon set of rules. I will discuss partnership building and management in a later chapter.

While there are numerous challenges inherent in CBPR partnerships, it is the very process of working through these challenges that makes the projects and partnerships stronger, builds community capacity, enhances investigator skills, and empowers community partners. The process of colearning benefits all involved and yields important findings for direct application to real-life situations.

CONCLUSION

CBPR is an approach that engages the community under study in every aspect of the research process. In so doing, it improves the relevancy and appropriateness of research. It encourages a team approach to some of the world’s most immutable problems and helps to translate research into practical, real-world interventions. The foundational underpinnings of the approach from Lewin to Freire discuss the need to develop equitable meaningful partnerships to meet these goals. There are challenges to doing CBPR, but there are many benefits. Over the course of this book, we will help the reader understand the major steps in doing CBPR. We hope the reader will consider when and how to use CBPR and that this approach will be benefit communities nationwide.

QUESTIONS AND ACTIVITIES

Activities

Invite a local community partner to join the class discussion and provide his or her perspective on research. Then have students break up into discussion groups to identify the challenges and benefits of a CBPR approach to research.

Have students read a CBPR study and provide a critique of the strengths and weaknesses of the approach for the problem under study.

Questions for Discussion

1. How does CBPR challenge and contribute to the fundamental constructs of research?

2. What is the benefit of identifying and using local knowledge?

3. What are the potentially conflicting agendas of communities and academics?

4. What are some of the challenges inherent in CBPR?

5. Discuss the threats to external validity when using a CBPR approach. Brainstorm strategies for improving external validity when working with community partners.

NOTES

1. Viswanathan M, Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Samuel-Hodge C, Maty S, Lux, L, Webb L, Sutton SF, Swinson T, Jackman A, Whitener L. Community-Based Participatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99 (Prepared by RTI–University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication 04-E022-2. Rockville, MD: Agency for Healthcare Research and Quality; 2004:22.

2. Szilagyi PG. Translational research and pediatrics. Academic Pediatrics. 2009 Mar-Apr;9(2):71–80. 3. Heller C, de Melo-Martin I. Clinical and translational science awards: can they increase the efficiency and speed of clinical and

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