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COMMUNITY-BASED PARTICIPATORY RESEARCH |
At the time of the study, Kathleen M. MacQueen and Eleanor McLellan were with the National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Ga. David S. Metzger and Roseanne Scotti are with the Center for Studies of Addiction, University of Pennsylvania, Philadelphia. Susan Kegeles is with the Center for AIDS Prevention Studies, University of California at San Francisco. Ronald P. Strauss is with the Schools of Dentistry and Medicine, University of North Carolina at Chapel Hill. Lynn Blanchard is with Lehigh Valley Hospital, Allentown, Pa. Robert T. Trotter II is with the Department of Anthropology, Northern Arizona University, Flagstaff.
Correspondence: Requests for reprints should be addressed to the Office of Communications, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Mail Stop E-06, Atlanta, GA 30333.
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSReferences |
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Increased emphasis on community collaboration indicates the need for consensus regarding the definition of community within public health. This study examined whether members of diverse US communities described community in similar ways.
To identify strategies to support community collaboration in HIV vaccine trials, qualitative interviews were conducted with 25 African Americans in Durham, NC; 26 gay men in San Francisco, Calif; 25 injection drug users in Philadelphia, Pa; and 42 HIV vaccine researchers across the United States. Verbatim responses to the question "What does the word community mean to you?" were analyzed. Cluster analysis was used to identify similarities in the way community was described.
A common definition of community emerged as 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. The participants differed in the emphasis they placed on particular elements of the definition. Community was defined similarly but experienced differently by people with diverse backgrounds. These results parallel similar social science findings and confirm the viability of a common definition for participatory public health.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSReferences |
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Efforts to develop and test HIV vaccines have highlighted social challenges that make community support, trust, and involvement critical for the long-term success of preventive HIV vaccines.17 Project LinCS (Linking Communities and Scientists) was undertaken to identify effective strategies for meeting these challenges. HIV vaccine efficacy trials and, ultimately, immunization programs require national coordination across diverse communities. The primary Project LinCS research objective centered on identifying ways to make efforts such as large-scale efficacy trials and immunization programs as participatory as possible. A related objective was to demonstrate the value added to research when community members actively participate in the design, implementation, and interpretation of the research.
For this commentary, we analyzed data from 1 component of Project LinCS that asked people how they defined community. The interviews were conducted with diverse groups, thus allowing us to look at the potential effect of local and historic experience on the way people defined community and to determine whether a single definition of community could effectively encompass the diversity of local experience.
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METHODS |
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Interviews were tape-recorded, transcribed into computer text files, and coded by interview question. Verbatim responses to the following question were then extracted for analysis: "The word ‘community’ means different things to different people. What does the word community mean to you? What is a community?"
Data Analysis
The analysis team developed a structured codebook through a standardized iterative process.18 The extracted text was read and, on the basis of the text content, a set of initial codes and definitions was proposed. None of the codes were specified before the text was read. Two people then independently coded randomly selected text segments from each participant group and compared results. Coding discrepancies were discussed with the analysis team and the codebook was revised accordingly. This process was repeated until the coders reached a satisfactory level of agreement.
To minimize the possibility that relevant text was missed, all text was double-coded. Intercoder agreement for text associated with each participant group was then assessed for each code by 
scores.19 For each code with a of less than 0.8, discrepancies in coding were reviewed by this commentary's first author, who then decided whether to apply the code to the text in question. For codes with a k of 0.8 or greater, discrepancies were reviewed by the 2 coders, who then decided which code applications to retain. Text coding and intercoder agreement assessments were done with a developmental version of the software program AnSWR.20
For each participant, numeric listings summarized whether or not each code was applied to that person's text. Numeric matrices were then generated to summarize which codes occurred together in the text of all persons within each participant group. From the matrices, complete-link Johnson's hierarchical clusters were generated in ANTHROPAC21 to identify core elements used to define community. The cluster analysis helped identify similarities in the way people defined community and the extent to which those similarities cut across participant groups.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSReferences |
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Of the 118 participants interviewed, 113 provided definitions of community (the question was omitted in interviews with 3 participants in Durham and 2 in San Francisco). Coding identified 17 distinct themes or elements that appeared in the definitions of 2 or more respondents (Table 1
). Hierarchical cluster analysis identified 4 clusters among the themes. A core cluster contained 5 elements: locus, sharing, joint action, social ties, and diversity. Each core element reflected some aspect of face-to-face interaction. A second cluster centered on group-based elements of community: divisiveness, leverage, pluralism, and responsibility. These elements reflected social cohesion and community involvement and often acted as boundary-setting or -maintaining mechanisms. Each element of these 2 clusters was cited by at least 4 members of each participant group.
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Core Elements of Community
Each of the 5 core elements—locus, sharing, joint action, social ties, and diversity—was cited by 20% or more of respondents (Table 1
). Locus was included in 77% and sharing was included in 58% of all definitions. Both locus and sharing were included in 42% of responses, and at least 1 of the 2 was included in 93% of them. Locus and sharing were each cited alone (i.e., without discussion of other core elements) in 16% of responses. Neither joint action nor diversity was discussed alone, and social ties were discussed alone by 2 people (2%). Sharing and locus were discussed by some participants as alternative ways to define community, while others described them as closely interconnected. Definitions that included all 5 elements were elicited by 8 participants (7%); another 13 definitions (11%) included all of the core elements except diversity. These 2 combinatorial groups account for 27% of all definitions offered (Table 2). Each of the core elements is described below; the quotations in the box on p 1933 illustrate how these elements were woven into actual responses.
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Sharing: common interests and perspectives. Sharing referred to the existence of shared perspectives and common interests that contributed to a sense of community. Community members were described as sharing the following:
• Values, norms, mind-set, viewpoint, ideology, beliefs, visions
• Passions, obsessions, interests, likes and dislikes, opinions, concerns
• Activities, goals, objectives
• Symbols, jargon
• Skin color, sexual identity
• Tribulations, oppression, repression, history
Sharing contributed to a sense of community through the following:
• Common issues, threads, beliefs, factors
• Being in tune with each other
• Comfort, familiarity, togetherness, identity, recognition
Joint action: a source of cohesion and identity. Joint action was described as a source of community cohesion and identity. A conscious intent to generate community through action was not viewed as necessary; rather, joint action was seen as leading naturally to the creation of community. Community was described as emerging from the joint actions of people who did the following:
• Socialize, hang out, converse, intermingle, gossip, "shoot the shit"
• Work at the polls, volunteer at the library, run phone banks, train people, work on projects
• Keep people informed about resources, services, and what's happening
• Paint houses; paint the street; push brooms; shovel snow; keep up the area; clean up the block, neighborhood, yard, or house; have block parties
• Give food, share resources, provide for neighbors in need
• Watch over, check up on, look out for, keep an eye on each other
• Set values and goals for the children, have their butts kicked a little bit if they're slacking off, push for the betterment of everyone, do something positive, improve the neighborhood
• Get together, do things together, work together, act together, participate, plan, get things done, get inspired, engage in activities, give input, accomplish goals
• Write, speak, educate, encourage, pray
Social ties: the foundation for community. Social ties were described in terms of interpersonal relationships that formed the foundation for community. In some instances, such relationships were described as requiring little, if any, effort or ongoing acknowledgment on the part of the individual. The types of relationships cited included the following: family, parents, siblings, cousins; roommates, household; lovers, partners; friends, neighbors, associates, coworkers, acquaintances; role models, support groups.
In addition, participants often described characteristics that they associated with community-based relationships or people. Community, participants said, meant ties with people
• Whom they can trust
• With whom they feel comfortable
• Who care about each other
• With whom they interact, hang out, choose to be sociable, spend time, connect
• Who are known to them
• Whom they always see in the background or around them
• With whom they grew up
Diversity: social complexity within communities. Diversity emerged in discussions of social complexity (e.g., communities within communities, stratification, interwoven groups, hidden communities, or multiple levels of community). As used here, diversity excluded culturally based ethnic distinctions (see the discussion of pluralism below). Discussions of diversity focused on a larger societal view of community and made reference to differences in interpersonal interaction that resulted from the following:
• Different levels of interaction between people, from the intimate to the superficial
• Demographic and social diversity in the form of race, ethnic origin, socioeconomic status, sexuality, drug use, profession
• The presence of specialized groups that performed needed tasks, such as activists and service providers
• The presence of groups that identified with overlapping or multiple communities
• The presence of groups that were disowned, stigmatized, stereotyped, or distrusted within communities
As seen in Figure 1A, the saliency of each of these elements for the core definition of community varied by participant group. Action, locus, and social ties were the most consistently discussed elements across all groups. Sharing predominated in interviews among scientists and gay men in San Francisco, while diversity was discussed relatively infrequently by all groups except the San Francisco participants. Thus, the relative saliency of sharing and diversity appears to be an important distinguishing characteristic of communities.
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Group-Based Elements of Community
Like the core elements, the group-based elements of community—divisiveness, leverage, pluralism, and responsibility—had meaning across all of the participant groups but were less frequently cited than the core elements (Figure 1B). Overall, at least 1 of the group-based elements was cited by 36 (32%) of the participants, including 18 (75%) of the participants from San Francisco, 8 (32%) from Philadelphia, 4 (18%) from Durham, and 6 (14%) of the scientist participants. Nineteen participants cited 2 or more group-based elements. Discussions centered on the implications of individual-level behavior for the community as a whole and on the relationship of the community to larger society (see box p 1934).
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Discussions of leverage centered on the potential ways that groups or individuals can bring about positive or negative consequences for the community as a whole. Pluralism referred to discussions of the maintenance of distinctions between coexisting ethnic groups. Unlike the core element of diversity, which focused on variability in a wide range of individual-level characteristics, pluralism implied ethnic and cultural distinctions among people living in the same area. Cultural pluralism is an anthropologic concept defined as "social and political interaction within the same society of people with different ways of living and thinking."24(p658) The challenges of living in a pluralistic community were described primarily by African American, Latino, and Asian/Pacific Islander gay men in San Francisco who attempted to navigate simultaneously among problems related to their ethnicity (e.g., racism, restrictive immigration laws) and those related to their sexual identity (e.g., homophobia, rejection by family members).
Responsibility was discussed in terms of the way people were or should be responsible for their own behavior, including how their behavior reflected on or affected the community as a whole. As such, leverage and responsibility were often discussed together.
The Impact of Stress on a Community
Two clusters emerged that centered on stresses affecting community. The first centered on the negative effects of criminality and drug use. As seen in Figure 1C, although these were more frequently discussed by participants in Durham and Philadelphia, they were described as elements that undermine community in San Francisco as well. In contrast to the stresses of drug use and criminality, AIDS was more likely to be described as something that brought people together in a common struggle, increasing a sense of unity. For one Durham participant, the violent death of a child prompted a similar response, motivating her to work to improve circumstances in her community (see box p 1935).
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSReferences |
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Taking a different approach, McKeown and colleagues27 analyzed the way community was conceptualized in 4 classic ethnographic studies conducted by 2 anthropologists at different stages in their careers. They noted overall agreement in the use of 4 basic attributes to describe community: locality, biological and social membership, common institutions, and shared actions. From a psychological perspective and using an empiric approach that parallels our own, Chavis and colleagues28 identified 4 elements composing a sense of community: membership, influence, integration and fulfillment of needs, and shared emotional connection.
Using data from a study in a suburb of Toronto, Wellman and Wortley29 argued that locus was of decreasing importance for urban communities and that these were best described in terms of "personal community networks" that are socially diverse in composition, spatially dispersed, and sparsely knit. Others have suggested that the decreasing importance of locus actually leads to a sense of the loss of community. For example, Glynn30 evaluated the relationship between people's ideal sense of community and their perception of their actual community in 3 diverse settings (an Israeli kibbutz and 2 dissimilar cities in Maryland) and found that neighborhood identification was important for the development of an actual sense of community.
Patrick and Wickizer9 reviewed social science definitions of community with an eye toward developing and implementing effective community-level health interventions. They identified 3 broad conceptual approaches to the definition of community: those that defined community as place, as social interaction, and as social and political responsibility. The concept of social and political responsibility is similar to our core element of joint action, combined with our group-based elements. Patrick and Wickizer9(p51) offered a working definition of community as "the entire complex of social relationships in a given locale, and their dynamic interaction and evolution in working toward [the] solution of health problems."
The importance of local diversity has not been previously articulated in definitions of community, although the effect of such diversity on health measures has been noted. For example, Sampson and colleagues31 pointed to the need to explore the meaning and sources of variation within neighborhoods or local communities for collective efficacy for children. Zakus and Lysack16 noted that communities are rarely, if ever, a homogeneous whole and that this represents a major challenge for successful community participation in setting health policy. The fact that diversity emerged as a core element in our empiric exploration of definitions of community was driven to a great extent by the experiences of the gay men who were interviewed. San Francisco is a national and international meeting ground for gay men. The interviews we conducted suggest that many of them are consciously seeking to build a community based on a positive valuing of unity, diversity, and cultural pluralism. With increased mobility and immigration throughout the United States, the importance of diversity for community structure and function is likely to increase in other locations and for other populations. The challenges presented by local diversity, in turn, are likely to become increasingly important for public health efforts as well.
Implications of the Experience of Community for Collaboration
The saliency of the different elements of community for each of our 4 participant groups had implications for the ways in which our collaborations developed. For gay men in San Francisco, a strong sense of shared history and perspective was a dominant theme, followed by a sense of identity with a specific location, the creation of strong and lasting social ties, established avenues for joint action, and the role of diversity. This profile is superficially similar to the one elicited from the vaccine researchers; however, particular elements were discussed less frequently than in San Francisco. Significant differences also existed with regard to how the elements were discussed. Most of the San Francisco participants had thought about community, and many were struggling to reconcile their need for community with a sense of marginalization from society at large. In contrast, the scientists tended to describe themselves as well grounded in multiple communities.
The profiles for Durham and Philadelphia also had a surface resemblance to each other. In contrast with San Francisco participants and the scientists, Durham and Philadelphia participants viewed locus as the principal element of community. This was especially true for IDUs in Philadelphia. Both groups emphasized the importance of joint action and social ties, while minimally discussing the role of diversity. African American participants in Durham included more college-educated and nonheterosexual individuals than did Philadelphia participants and, perhaps as a result, were somewhat more likely to discuss the role of shared perspectives for community than were Philadelphia participants. In both Durham and Philadelphia, most people described community as a "given" in their immediate environment. However, for IDUs, the given community environment was less likely to be described as supportive than for African Americans in Durham.
These differences in the way people perceived and talked about the core elements of community suggest the need for multiple models of collaboration for public health research and programs. In fact, the collaborations we established in San Francisco, Durham, and Philadelphia illustrate this need. At each site, researchers worked with a community advisory board (CAB), but in different ways.
The San Francisco collaboration.
In San Francisco, community advocates and activists were collaborating with HIV vaccine researchers before Project LinCS was funded. Consistent with the emphasis on sharing seen in Figure 1A, the CAB members placed a high value on opportunities for in-depth discussion with both local and nonlocal Project LinCS collaborators. Similarly, they recognized the importance of existing social ties and activities and were careful not to allow Project LinCS to draw energy away from other HIV vaccine work. As a result of their long involvement in treatment and prevention activities, many San Francisco CAB members had a sophisticated understanding of research. Reflecting the saliency of joint action for the community, the CAB used this knowledge to take an active role in developing the protocol and interview guide for the scientists. Additionally, half of the scientist interviews were conducted by a San Francisco CAB member (with full support from the Philadelphia and Durham CABs). The CAB also collaborated with local investigators in the development of a complex targeted sampling plan to ensure maximal diversity of Project LinCS participants, reflecting their awareness of the important role of diversity and pluralism in their community.
The Durham collaboration.
In Durham, the African American community was beginning to mobilize around AIDS when Project LinCS began. Here, the local investigators had to reach out widely to people and organizations with links to the African American community. A socioeconomically diverse group of representatives came together and volunteered to work with the researchers, meeting at a historically African American university campus in Durham. Consistent with our analysis that showed an emphasis in Durham on locus and joint action, the CAB focused its efforts on making sure that the project provided tangible benefits to the local community. These efforts resulted in a brochure on questions to ask when volunteers were invited to participate in research and a local newspaper insert on lessons learned from the project, which was distributed to more than 11 000 houses in predominantly African American neighborhoods.
The Philadelphia collaboration.
The Philadelphia investigators had a long-standing relationship with IDUs that centered on a storefront research program. About a year before Project LinCS began, the investigators invited study participants to form a CAB. The meetings were initially chaired by the principal investigator, but later the CAB members established their own set of rules and took on increasing responsibility for the functioning of the board. Philadelphia LinCS participants emphasized locus, action, and social ties in their definitions of community. Similarly, the CAB defined its primary role as one of maintaining and building linkages between the research staff and the IDUs in the surrounding neighborhoods, a community that functioned largely through informal structures and at the margins of society.
The Role of Community Representation for Collaboration
Israel and colleagues13 and Zakus and Lysack16 noted that participatory approaches such as ours that rely on representation can lead to conflicts with regard to how community is defined and who may legitimately represent the community. Our experiences, and our empiric data, suggest that an important element for success may be ensuring that CAB representatives are actively connected to diverse people in their local communities and empowered to function in ways that are meaningful to their community base. Other research supports this view. Conway and colleagues32 compared perceptions of health priorities among local District Health Council members and among a random sample of household residents in Chicago and Cook County, Illinois. The results showed substantial agreement in priorities, indicating that advisory boards can effectively represent community perspectives regarding health priorities. Jewkes and Murcott33 presented results of a qualitative assessment of the uses, meanings, and interpretations of community participation in the context of the World Health Organization's Healthy Cities Project as implemented in the United Kingdom. In interviews with 50 participants drawn from health, local government, and voluntary sectors, they found that "being known" was the most fundamental requirement of an effective representative. Data from a case study by Bond and Keys34(p37) support the feasibility of empowering multiple community groups simultaneously through a single advisory board "when the board culture promoted inclusionary group processes and the activation of member resources."
If collaboration is to be an effective component of public health research and programs, it will require a greater understanding of the way people interact individually and as groups. The definition of community provided in this commentary supplies a potential framework for investigating such interactions. Each of the core elements composing community (locus, sharing, joint action, social ties, and diversity) can be evaluated relative to public health outcomes through existing social science models, including social network analysis,35–37 sense of community,38–42 social capital,43,44 cultural domain analysis,22,23,45,46 and geographic information systems.47 Such models provide a solid foundation for a systematic approach to community-level and community-based public health research and programs.
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CONCLUSIONS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSReferences |
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Community collaboration in public health programs and research presents many challenges, in part because community has been defined in ambiguous and contradictory ways. Despite important differences in the experience of community, our study suggests that people largely agree about what community is. The empiric evidence, in turn, is bolstered by established social science theory. Additionally, existing social science tools provide a strong foundation for measuring and evaluating the contributions of community collaboration to the achievement of public health objectives.
Thus, a sound empiric and theoretic basis exists for achieving consensus on a definition of community for public health. Consensus will facilitate the systematic comparison of local populations by directing attention to a set of core elements for measurement. Systematic comparison, in turn, will facilitate hypothesis testing and strengthen the scientific study of the role of community in public health. For example, it could help us identify functional thresholds for the core elements, such that groups above the threshold are significantly more likely to experience beneficial health outcomes than those below the threshold. In other words, it can help us understand how to build and support "good" communities that enhance the health of their members. It can help us understand which characteristics or combinations of characteristics are necessary or sufficient for supporting intermediate goals such as the sustainability of prevention programs or the diffusion of beneficial health practices. And it can provide a sound theoretic basis for building successful community collaborations in public health through the systematic evaluation of who participates, why they participate, what they share, what they do, and how participants are connected to each other and to their constituencies.
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Acknowledgments |
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Footnotes |
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Accepted for publication June 29, 2001.
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References |
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