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Defining the Community and Power Relationships

“Reviews of the effectiveness of collaborations for improving community health indicate that they can be effective but that there are many potential obstacles to realizing the benefits of a participatory approach in both public health research and programs. In particular, the lack of an accepted definition of community can result in different collaborators forming contradictory or incompatible assumptions about community and can undermine our ability to evaluate the contribution of community collaborations to achievement of public health objectives.”1

In this chapter we will explore some important questions:

• What is community? • Who represents community? • What is a community advisory board? • Who are the right stakeholders? • What are the existing power relationships between academics and community partners? • What are the rules of CBPR partnerships? • What are strategies for assessing community readiness for research?

WHAT IS COMMUNITY?

When embarking on a CBPR project, one of the first challenges is to define the community of interest. Who is the population of interest? What are the boundaries of their “community”? Is this a community that is geographically bounded (city, neighborhood, county) or one that is nongeographically defined by a common culture (Latinos, African Americans) or condition (parents of children with special needs) or other shared concern? Are you planning to work with those directly impacted by the issue or with the organizations that represent or serve them? The CBPR approach is often used to examine issues for underserved populations, to give voice to their concerns and help identify their perspective on the problem. However one chooses to define “community,” it remains the conceptual underpinning of CBPR, influencing who collaborates and participates, how sampling is conducted, where dissemination takes place, and, most importantly, how relevant the work is to the community of interest.

Example 1: Everett Immigrant Health

A community coalition in Everett was interested in engaging a researcher to learn more about the health implications of Immigration and Customs Enforcement (ICE) on immigrant health in their community. The coalition had a diverse membership, including agency directors, school administrators, several teachers, and representatives from several immigrant advocacy groups. Many were leaders in local Everett institutions (schools, community-based organizations). They had come together previously around a multiplicity of health and social service issues and together had successfully garnered resources for new programming. They shared common interests in wanting to make a difference in their city. While they generally defined their “community” as geographic—that is, those who worked and lived in Everett—they were particularly concerned with the most vulnerable populations (e.g., the poor, recent immigrants, and youth). Thus, for the CBPR project, they defined community as Everett, Massachusetts, but more specifically, as the underserved population of recent immigrants and, in particular, immigrants who were undocumented.

The term community has many meanings throughout the social sciences.2 Hillery (1955) identified more than 90 different definitions of community in prior literature.3 The majority of authors, however, consistently cite certain characteristics in their definitions, including social interaction, geographic area, and common ties.1 Anthropology,

sociology, public health, and psychology have all looked at communities slightly differently. Even within a discipline, there is no consistent agreement on the definition. Cultural anthropology tends to take an ethnographic perspective of community, examining the structure, norms, and social mores that bind individuals together.4 Sociology builds upon the concept of social capital and the interconnectedness of community members.5 Public health identifies the social and political responsibility of community and sees the community as a population. Psychology brings up the concepts of “a sense of community” and shared emotional connection.9–11 All of these elements are part of our understanding of “community” (Table 2.1).

Table 2.1 Examples of Key Constructs in Defining “Community”

Thus, as we think about community and working with communities, we may consider different ways of realizing the concept. For example, many define community by its geographic and political boundaries (city, county), while others may consider it any group of people that share a common set of characteristics (immigrants, women, parents). Community can also refer to a group of people bound together by shared condition or concern, such as a community of diabetics or a community of parents with children who have special needs. MacQueen and colleagues conducted a series of interviews to determine what community meant and identified a common definition that works well: a group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint action in geographical locations or settings.1 However, more importantly, she found that different groups had slightly different definitions about how they saw their communities. Today, with the advent of the Internet and social networking, communities cross geographic boundaries as well as age, gender, and race/ethnicity. As these tools become more and more popular, we need to broaden our definitions of community beyond physical geography.12 Wellman and Wortley have argued that community locus is less important and that “personal networks” are better used in defining

community.8 There may be multiple communities within communities, and individuals may be members of multiple communities.

When the term community is used, it often assumes homogeneity, singularity, cohesiveness, and consensus: what community X wants or what community Y believes. In fact, no community is homogeneous; there will always be a diversity of ideas, beliefs, and even communities within communities. In CBPR, it is important to recognize the diversity of community and learn from its members how it is defined and conceptualized. Recognizing how you are operationalizing your definition of “community” for the purposes of a CBPR project is the first step in your process. And your definition of community will also influence what the research project may or may not do or show for that community.

Once identified, the process of learning about a community is a pivotal task for the CBPR researcher. This takes time. It is an exploration that involves gathering existing and new data, meeting individuals and groups, building relationships, assessing strengths and weaknesses, and learning about the culture. To gain this knowledge, the researcher needs to spend time in the community learning about the existing social networks and the community institutions, organizations, and coalitions. The researcher needs to become familiar with the formal and informal leaders who can also provide insight into the political landscape and provide entrée into the community of interest. For those interested in pursuing CBPR, it is best to develop these relationships prior to launching a research project. Showing up at meaningful community events, having coffee with community members outside of work hours, or visiting organizations and sitting down with their directors are all ways of building relationships and demonstrating your commitment to the community that will be appreciated by your community partners. This process will help the researcher decide who to approach in the community engagement process and provides the foundation for the academic/community research partnership. In addition, through this “getting to know the community” process, the researcher should start to understand and map out the community strengths and assets.

WHO REPRESENTS COMMUNITY?

In CBPR, there is tacit agreement that “community” should include those impacted by the research issue13—that is, those patients, community members, and residents who are impacted by the issue under study. However, it is challenging to think about engaging community members, one individual at a time. Unless you have extensive community organizing skills, this can be a difficult challenge. Rather, many who conduct CBPR will work with organizations that represent the community of interest or with communities that have some organizational structure (representative leadership). This might include community coalitions, community-based organizations, advocacy groups, or local institutions such as schools, mayors’ offices, or health care providers. Both strategies can work well in CBPR; however, this author believes that while a participatory approach may be utilized with any group of interested community members, a CBPR project that does not elicit the experience of those impacted by the problem under study does not fully meet the goals of CBPR.

This brings us to the question of who represents community in a CBPR project. While working with institutions (government, community-based organizations, churches, and their leaders) provides the infrastructure necessary to forge CBPR relationships and conduct research, these organizations have differing abilities to represent the community voice. The experience will be quite different than working with a grassroots organization or a community coalition. A CBPR investigator needs to be aware of the strengths and limitations of working with different types of community groups and/or institutions. Important questions to ask of the group you choose to partner with are noted in Table 2.2.

Table 2.2 Questions to Consider in Community Group Engagement

Does this community group have representation of the population of interest?

Is the membership stable? Is the leadership engaged?

Does this group have long-standing ties to the community?

How long has the group existed? What’s their reputation? Can they get things done?

Do they have the ability to outreach to the population of interest or the community at large?

Have they done outreach before? Does their staff have experience and success with outreach?

Do they have adequate infrastructure to participate in partnership?

Can they enter into contracts? Are they incorporated? Have they done CBPR before? Can they manage grants?

The CBPR investigator also needs to understand the strengths and limitations of the representatives at the table. Israel and colleagues note that participatory approaches that rely on choosing representatives of community can be fraught with potential conflicts.14 Often, community leaders are identified as the representatives of the community, and while they have an understanding from their vantage point about the community, they may or may not be viewed by the populace as appropriate representatives. It is impossible to achieve full community representation in CBPR, but learning about the community and identifying leaders is a process. Constructing a community advisory group to facilitate representation is one strategy used in many CBPR projects.

THE COMMUNITY ADVISORY BOARD AND MEMBERSHIP

CBPR requires community participation. Participation requires a structured relationship with community partners so that members can engage throughout the project. Working with a “community advisory board” (CAB) is one way that an investigator can interface with community members and maintain an open dialogue.15–18 The CAB can act in an advisory role for multiple projects,15 or it can function as the community members of the research team for one project. It can be fluid or rigorously constructed with elected or appointed members, depending on partner preferences. How does this CAB get established? In some cases, such as in our Everett example, the advisory group was ready-made. There was an informal coalition of concerned leaders who approached the researcher. Their collaboration was based in previous activities including a Multicultural Affairs Commission. As their coalition evolved, they added leaders from different institutions (schools, after-school programs, churches) and additional members to fill in perceived gaps and expand the diversity of their membership. The following describes members of the Everett advisory group; these representatives joined the research team for the duration of the immigrant project.

“Six Everett community agencies, many members of the MAC, who had been actively involved in addressing immigrant issues in Everett, were involved in the research project: the Joint Committee for Children’s Health Care in Everett (JCCHCE), the Everett Literacy Program, the Muslim American Civic and Cultural Association (MACCA), Immaculate Conception and St. Anthony’s Catholic churches, La Comunidad, Inc., and the Everett police department. The JCCHCE focuses its efforts on improving access to health care and is actively involved in enrollment in both insurance and in the state Health Care Safety Net program.19 The two Catholic churches’ congregations include large numbers of Haitians and Brazilians. La Comunidad and MACCA are emerging immigrant service organizations focused on Latinos and the Arab and Muslim population respectively and both are led by immigrants. The Everett Literacy Program provides the majority of English Second Language courses in Everett. Representatives from these groups had extensive experience in coalition building, community organizing, and addressing immigrant concerns.”20

Unfortunately, an existing activated coalition or the “right” coalition is not always available or interested in partnering. It is often incumbent on the investigator to make contacts, develop relationships, and assess potential partners toward convening their own CAB. As investigators get to know the community, they may find that there are smaller groups of community members who want to work on an issue. There may be community activists who have strong opinions and want action. In every community, there are the go-to individuals, who may be formal or informal leaders. Their ability to organize community members and facilitate CBPR is a critical asset; however, it is equally important to understand their role in the political matrix of the community. In short, it is important to know whether they have clout and whether they have access to the community of interest.

Example 2: Somerville Youth Suicides and Overdoses

In the midsized urban community of Somerville, Massachusetts, there was a suicide cluster that affected young people over the course of a 5-year period. During this crisis, the mayor brought together a task force—the Mayor’s Suicide and Mental Health Task Force—that included many of his department heads (schools, police, health department), leaders of local youth-serving agencies, health organizations, mental health and substance abuse organizations, and a CBPR research organization. Many of these leaders did not live in Somerville or had short-term histories in the city, and they did not have direct connections to the population at highest risk. It was important to add representation from long-standing community members who knew the families and the children. Several community activists became involved in the task force, and they were able to reach out to those most at risk in a way that was impossible for many of the professionals involved. These informal leaders acted as connectors between the professionals and academics and the population at risk. Finding these individuals can be a challenge, but their contribution to CBPR efforts is invaluable.21

In establishing a CAB, both the investigator and the community partners need to ask whether the current representatives are the “right” representatives. Any community group wishing to engage in CBPR should do a self- assessment to determine if the right people are part of the process. The investigator may not have the in-depth knowledge of the community to make this determination. Here is where community insight provides guidance to

identify the appropriate membership for a CAB. They know who the players are and understand how to avoid the political minefields. The strength of their relationships in the community will benefit the CBPR project, as they can utilize their own social networks to engage other community members. In our Everett example, we added several new members to the research team, including youth and immigrant leaders, to help us access the populations of interest. These individuals were invited by CAB members who were building on their existing relationships. In CBPR, existing social networks are a powerful tool for community engagement.12

POWER DYNAMICS

“What is important and interesting for me is how you enter a partnership. The transparency principle is key but it’s difficult because the community does not like the word research. But it’s important to be open about this and say that I’m an academic. It’s important [that] the agenda of the researchers are known” (Community partner-conference participant).22

“Trust is not something you hand to people. You have to earn it.” (Community partner-conference participant)22

Elements of successful partnerships include power sharing, open communication, equitable division of labor and resources, and mutual recognition.23 Partnerships are based on mutual respect and trust. Building partnerships is a challenging endeavor, especially since academics and community partners may differ dramatically in their professional experiences, their access to resources, their research literacy, and their comfort level in the community. The power and privilege connected with race, class, and educational attainments may be a wedge that separates the investigator from the community.24 The researcher may be associated with unearned advantages just by being affiliated with an academic institution or by having letters after his or her name. This is particularly true for communities that have been historically marginalized with deeply rooted experiences of discrimination and disadvantage. Throughout history, there are examples of unethical research that has impacted disadvantaged and minority populations, leaving a legacy of mistrust and disappointment. In addition, communities have experienced years of “being studied” by universities who don’t give back.

“Communities have no motivation because these research projects go on yet there is no investment in the community after….” (Community partner-conference participant)22

The academic/community conflicts of long standing are played out in town/gown politics and exemplified by ivory tower mentalities. Academic institutional resources, whether real or perceived, are generally unavailable to the community. Thus, while CBPR is rooted in social justice and requires “collaborative, equitable partnerships” that “promote co-learning and capacity building among partners,”14 dealing with power and privilege can present critical challenges in the CBPR process.24 Researchers must ask themselves about their own commitment and capabilities to engage in a CBPR project. Do they possess the skills and knowledge that will enable them to be effective partners?

How do we negotiate the inherent power dynamics of academic community partnerships? Respect and trust are not automatic. Investigators need to get to know the community. They need to spend time just “showing up” at events unrelated to the research. They need to be collaborative in their approach and humble in their demeanor. The term cultural humility, coined by Tervalon and Murray-Garcia (1998), refers to “a process that requires humility as individuals continually engage in self-reflection and self-critique as lifelong learners….”25 While cultural humility was initially applied in the realm of clinical care, it can be applied to CBPR. Investigators involved in CBPR need to assess their own cultural beliefs and assumptions in order to address power imbalances and develop partnerships based in mutual trust.24 They need to listen and demonstrate their commitment to the community long before and after the actual project begins. Then they need to negotiate the research agenda with their partners in an equitable manner that extends from decisions about design to those about budgetary concerns. Throughout the process, they need to be transparent. You may never be able to completely erase the historical experiences or the reality of resources, but through the practice of cultural humility and by explaining the situation to your partners from the beginning, you are more likely to build the trusting relationships that are needed for successful CBPR. Building partnerships is a long-term commitment that can take years.

“While this person is a community member that may not have a Ph.D., they have input that is just as equally important and applicable.” (Community partner-conference participant)22

In Somerville, as a researcher, my most important mentor was a community activist who had grown up in Somerville and owned the local tattoo parlor. She knew the families and peers of the young people who had committed suicide. She warned me not to try to go directly to the young people to do the investigation of the suicides. She said I would be perceived as a privileged outsider who was going to tell them they had mental health problems. Instead, she urged me to

work with her to create a conduit to these youth. This was very difficult, as I thought myself an expert in the field. But her advice proved critical as we addressed the problems in the community. She was a trusted insider who was able to act as a liaison between the affected community and the professionals.

As with any relationship, CBPR partnerships depend on mutual trust, credibility, and strong personal relationships. Practicing and demonstrating cultural humility, a willingness to share power, to engage in collaborative decision making, to show up, and to demonstrate your commitment to the community after the specific research project is over are all important lessons in CBPR.

COMMUNITY READINESS FOR RESEARCH

As part of building a CBPR partnership, there are many considerations that both community partners and researchers should consider prior to and throughout the engagement process. A pre–CBPR assessment can help both parties avoid pitfalls during the study itself. Table 2.3 notes the list of questions that should be considered before engaging in CBPR. Answering these questions will help both parties understand the challenges and benefits of participation. In particular, as part of the development of a partnership pre–CBPR, community members should ask several specific questions to assess their own readiness for research. Do they have the time to participate without sacrificing their other responsibilities? Are they going to get appropriate financial resources to support their work from the researcher? Do they have the organizational capacity to participate in the research project? Each of these issues can create problems if it is inadequately addressed beforehand.

Table 2.3 Readiness for CBPR

Questions for community partners to ask researcher prior to engaging in CBPR

1. What kind of partnership does the researcher have in mind? Is it really to be participatory? 2. How will decisions get made? 3. What are the research aims? 4. Who is the target population of interest? 5. How will the research be funded? 6. What will be our organization’s and/or my role in the project? 7. Will the time be compensated? 8. Who will own the data? What will happen to the data in the future after the project is completed? 9. What benefits will the project leave behind in the community (skills, programming, policy, infrastructure,

capacity building)? 10. What is the dissemination plan for this research?

Questions for community partners to ask themselves prior to engaging in CBPR

1. Does this study address an important problem relevant to my community and my constituents? 2. How does the research aim fit with the mission of my organization? 3. Do we have the capacity to participate? Space? Staff? Time? 4. What are our conflicting priorities? 5. What will be the impact of doing research on my organization’s ability to get its core work accomplished? 6. Will the results lead to action that will help my community?

Questions for CBPR researchers to ask themselves prior to engaging in CBPR

1. Do I have connections in the community? 2. Do I know enough about the community, its makeup, assets, and challenges? 3. Do I have the time to invest in and develop relationships? 4. Do I have the support of a mentor who has experience in CBPR? 5. Do I possess cultural humility?

Specific details for assessing readiness from the community perspective will be further discussed in Chapter 5.

RULES OF PARTNERSHIP

Once a CBPR partnership is established, it is important that roles and responsibilities are outlined. By answering the questions posed for research readiness, partners can explore the details of who will do what, where, and when and mutually determine the organizational structure for the project itself. Some CBPR investigators and their community partners will choose to enter into more formal relationship in order to clarify roles and responsibilities. A memorandum of understanding, or MOU, can be used to outline the expectations. The development of an MOU will require consensus from the entire group. Examples of areas to be addressed in a MOU include the following:

• Overview of the project • Description of each party’s responsibilities • Time frame • Deliverables or milestones • Budget • Publication/dissemination requirements

This MOU can help both academic and community partners negotiate up front how the project will unfold and may help avoid future disagreement. With or without an MOU, it is important to have a transparent process in which these items are outlined early in the CBPR project. Baker and colleagues (1999) point to a set of principles that may be helpful in guiding effective academic/community partnerships that include mutual respect, trust, and honoring partners’ agendas.26 Each partnership may want to discuss its governance structure and decision-making strategies as part of this process. How will conflict be handled? What does each party hope to gain from the project and what are their plans for dissemination? In the Everett process, at the very beginning, the researcher said that one of her goals was to write an article for a peer-reviewed journal. She offered authorship to anyone in the group who was interested and discussed what would be expected of authors. Several community members said they wanted to be included, while others opted out. Similarly, the community partners wanted to host a large community forum to discuss the results of the research at the end of the project. There was money set aside for this activity in the budget, and a timeline was agreed upon in the CAB’s first meeting. While this dual strategy does not always result in a smooth CBPR process, it can help avert pitfalls and satisfy the goals of both the academics and the community partners.

MAINTAINING PARTNERSHIPS

As a CBPR partnership moves forward through a project, there will be an ongoing need to maintain transparency, communication, and engagement. New concerns will emerge from the community that will need to be addressed. The researcher will need to be fully prepared to listen to all the voices, and the partnership will need to navigate difficult decisions. However, with a strong foundation of mutual trust, these obstacles can be overcome and a fruitful relationship developed.

CONCLUSION

In summary, community in CBPR can be defined in multiple ways. In general, it represents groups of people with shared concerns. As CBPR researchers define the community in which they intend to work, they need to learn about the strengths and assets of that community. This is a process that requires actively engaging with community members, learning about community norms, and visiting the community. As they begin to engage with community partners, they must understand the context in which these partners live their lives. The success or failure of a CBPR project rests on the strength of the academic/community partnership regardless of whether the community engages the researcher or the researcher seeks out community members.

QUESTIONS AND ACTIVITIES

Activities

In the classroom: Have students map out a community as a group that they are familiar with, including its assets. Have them brainstorm strategies for getting to know the community, including suggestions about key stakeholders.

Out of the classroom: Have students take a tour of a local community, including institutions as well as important community landmarks (houses of worship, city hall, schools, parks, memorials). When they return, have the group discuss what their observations told them about the nature of the community (i.e., Were buildings in good repair? Were stores open? Were people walking about?).

Using a fishbowl exercise, have students role-play a first meeting between a researcher and a community partner while other students watch. The researcher’s agenda is to find and seek out potential areas for research, while the community partner’s agenda is to garner resources for her or his community program for youth development.

After the role play, have student observers describe what went well and what could improve in this relationship. Have students who participated in the role play describe their inner dialogue during the meeting.

1. What was the primary objective of the researcher? Was he or she able to establish a relationship with the community partner?

2. Were the agendas of researcher and community partner at odds? Compatible? Did they trust one another?

3. What challenges did you see in the interaction?

Questions for Discussion

1. What are some of the major strategies for getting to know a community of interest?

2. What might be the makeup of a community advisory board for a CBPR study on HIV/AIDs in an urban community. How might you go about convening such a group?

3. How do power dynamics influence in a CBPR project?

NOTES

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2. Jewkes R, Murcott A. Community representatives: representing the “community”? Social Science & Medicine. 1998 Apr;46(7):843–58. 3. Hillery G. Definitions of community: areas of agreement. Rural Sociology. 1955;20:111–23. 4. Mckeown TC, Rubinstein RA, Kelly JG. Anthropology, the meaning of community and prevention. In: Jason LA, Hess RE, Felner RD,

Moritsugu JN, eds. Prevention: Toward a Multidisciplinary Approach. New York, NY: Haworth Press; 1987:35–64. 5. Lee D, Newby H. The Problem of Sociology: An Introduction to the Discipline. London, England: Unwin Hyman Ltd.; 1983. 6. Chavis DM, Newbrough J. The meaning of “community” in community psychology. Journal of Community Psychology. 1986

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