PART III

Understanding High-Risk Communities

THE CONCEPT OF COMMUNITY

The study of “community” is a basic research endeavor that has considerable implications for the study of HIV and AIDS. An understanding of community can facilitate the identification and description of high-risk populations, and it can help researchers design their interventions to maximize participation.

Communities have a “bounded” character that defines who is included and excluded from membership, and members will vary in their subjective sense of “we” versus “they.” Investigators have varied in the degree to which they emphasize shared territory as a defining characteristic of community, as opposed to subjective membership and identification with others. The latter obviously constitutes a notional sense of community that does not require a physical locale for its existence. Others have pointed to the critical importance of the voluntary or involuntary character of membership in a community. The basis for the distinction here is between ascribed communities, into which individuals are placed by others because they possess particular characteristics, such as gender, age, race, ethnicity, or other negatively or positively valued status, whether these individuals want to be so placed or not, and achieved communities, where membership depends upon the individual's choices and actions, such as a voluntary association or occupational community.

People can belong to several communities simultaneously and are likely to have different levels of identification with them. Some of these communities may be associated with high risk for HIV infection, and others may not. The researcher's task is to understand the individual 's priorities among his or her



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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary PART III Understanding High-Risk Communities THE CONCEPT OF COMMUNITY The study of “community” is a basic research endeavor that has considerable implications for the study of HIV and AIDS. An understanding of community can facilitate the identification and description of high-risk populations, and it can help researchers design their interventions to maximize participation. Communities have a “bounded” character that defines who is included and excluded from membership, and members will vary in their subjective sense of “we” versus “they.” Investigators have varied in the degree to which they emphasize shared territory as a defining characteristic of community, as opposed to subjective membership and identification with others. The latter obviously constitutes a notional sense of community that does not require a physical locale for its existence. Others have pointed to the critical importance of the voluntary or involuntary character of membership in a community. The basis for the distinction here is between ascribed communities, into which individuals are placed by others because they possess particular characteristics, such as gender, age, race, ethnicity, or other negatively or positively valued status, whether these individuals want to be so placed or not, and achieved communities, where membership depends upon the individual's choices and actions, such as a voluntary association or occupational community. People can belong to several communities simultaneously and are likely to have different levels of identification with them. Some of these communities may be associated with high risk for HIV infection, and others may not. The researcher's task is to understand the individual 's priorities among his or her

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary community identifications and to learn how to activate those memberships for intervention purposes. Communities exist not only in the minds of their members but are also socially constructed by the views and actions of outsiders. Outsiders constitute an important part of the “we/they feeling” that pervades socially derogated communities. The costs of membership become so high for individuals in some communities that there are strong incentives for them to avoid explicit acknowledgment of their membership if at all possible. For example, many closeted gay and bisexual men and women struggle with the various cultural definitions of sexuality imposed on them and with their membership in both the straight and gay communities. A wide range of research methods has been employed to study communities: historical research; ecological census research; participant observation; and surveys, including those using targeted sampling. Considerable debate has developed around strategies for developing systematic, multimethod, observational designs that exploit the best of each of the methodologies. Such approaches should increase the thoroughness of our understanding of communities. High-Risk Communities As noted above, communities may be defined by their structure, such as their boundaries or the relationships they maintain with other communities, and may also be characterized by processes. Both structure and process are important for understanding communities that are epidemic epicenters. High-risk communities can provide venues for efficient mixing of infected and uninfected populations. Communities that are at-risk for the spreading of HIV infection are quite diverse and can include college campuses, the military, stable gay neighborhoods, shooting galleries, crack houses, prisons, bathhouses, brothels, and neighborhoods with homeless people. There is a variation in the level of risk within these different types of communities, but when HIV spreads within them, it usually spreads quickly because of the existence of tightly linked networks that are connected through sex and drugs. Such communities can be difficult to study because their members may be highly mobile and are often suspicious and resistant to observation. Three types of high-risk communities will be described here: a gay community organization undergoing changing organizational patterns, a disintegrating inner-city community, and a community undergoing war and low-intensity conflict. These high-risk communities are the contexts for individual lives.

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary Changing Patterns of Gay Community Organization For many years, homosexual men and women have formed political and social organizations that supported a sense of community. These organizations often functioned openly but out of the limelight of mainstream life. For the most part, the communities of homosexuals were communities of affiliation, without a corresponding geographic territory. The civil rights movement of the 1960s stirred political activism: homosexual organizations began to challenge discriminatory policies at the federal, state, and city level. This sense of having “rights” to equal treatment was part of a gradual shift in consciousness that brought the community “out of the closet” and led to the formation of important geographic centers of gay life. The galvanizing event in this transformation was the 1969 police raid on Stonewall Inn, a Greenwich Village gay bar. It was the third in a series of raids, but, this time—instead of responding with the fear and retreat as they had before—the patrons decided to hold their ground. The 200 patrons jeered the police, attracting a crowd of several thousand protesters. As the riot heated up, the crowd threw stones, bottles, cans, and other objects at the police. In the aftermath of the riot, the Gay Liberation Front was organized, and agitation for equality took on new dimensions (McDarrah and McDarrah, 1994). In the wake of the Stonewall Riot, as the event came to be called, many members of the emerging gay community felt free to adopt an openly gay lifestyle centered in a gay area. This transformation in lifestyle was a reflection, at least in part, of the ostracism homosexual men and women felt in their hometowns. In most places in the United States, homosexual men and women were treated with disdain, if not outright violence. Their choices were not “respectable ”, and if they were public about their sexual orientation, they risked being barred from mainstream life. This fierce repression alienated many, who wished to experience a freer and more accepting lifestyle. The creation of “gay refugees” was the precursor to the creation of “gay communities.” San Francisco's Castro District, which had been an Irish working-class community, was quickly transformed into the one of the largest centers of gay life in the United States (Fitzgerald, 1986). The Castro became a full-fledged gay neighborhood, with stores, laundromats, pharmacies, and other comforts of home. The new community created new organizations, new social networks, and new institutions. Part of the growth of gay culture was the development of establishments that facilitated sexual encounters, many of them anonymous. The bars,

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary bathhouses, and bookstores that hosted the new sexual culture fostered an ethos of sexual adventure. In the wake of this sexual revolution, sexually transmitted disease flourished. In the early 1970s, gonorrhea, syphilis, and hepatitis were the major diseases troubling the sexually active populace of San Francisco. Hepatitis was sufficiently common that San Francisco was chosen by the Centers for Disease Control as a site for key trials of the hepatitis vaccine. At some point in the late 1970s, HIV was introduced into the community. The dense networks of sexual partnerships allowed for efficient transmission of the virus. Estimates from population-based surveys suggested that 49 percent of the homosexually active men were infected with the virus by 1985 (Fullilove, 1992). In 1982, just a few months after AIDS had been recognized, the San Francisco Department of Health began prevention efforts, in collaboration with the gay community. The San Francisco “model” of intervention has been one of close collaboration between the Department of Health and each of the city's many communities. Mobilization in the gay community, which was most heavily affected by the epidemic, was widespread after early delays. Many initiatives were implemented to describe the needs of the community, to design appropriate campaigns, and to carry out prevention education. An important feature of the response to AIDS by the San Francisco gay community has been its willingness to grapple with new issues. For example, recognition of the special risks of young gay men and acknowledgment of the burdens carried by HIV-negative men are two of the contributions to reframing an ongoing epidemic that have been spearheaded by members of that community (Petrow, Franks, and Wolfred, 1990). Prevention efforts have targeted white gay men—especially those who were in the Castro when AIDS hit. Ongoing efforts are being made to reach gay men just joining a community that has already integrated epidemic disease into its daily life and to reach gay and homosexually active men of color. (Based on work by Fitzgerald, 1986; Fullilove, Wiley, Fullilove, et al., 1992; McDarrah and McDarrah, 1994; and Petrow, Franks, and Wolfred, 1990.) The Disintegrating Inner Core of New York City Over the past quarter century, there has been a slow disintegration of the inner-city communities of New York City—a disintegration that

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary is paralleled by that of minority inner-city neighborhoods throughout the United States. This process, which results from the loss of unskilled jobs in close proximity to low-income neighborhoods and from the loss of housing, has led to a hyperconcentration of poor people in areas of severely damaged urban habitat. The community disintegration of “proud but poor” neighborhoods is highly associated with the rapid spread of HIV infection. The continuing collapse has created ecological niches for the virus that are sustained by the presence of an active drug trade and easy access to anonymous sex. The forces that maintain these niches are, for the moment, greater than the public policies and the public health interventions that have been created to dislodge them. Rodrick Wallace has been the leading investigator working to describe the process of community disintegration and to delineate its links to the AIDS epidemic. In several dozen studies published since 1988 (see references), he has pointed out that misguided public policies have contributed to the current problems. Using the South Bronx as a case study of this process, he found that New York City's decision in the mid 1960s to close fire stations in that area left it vulnerable to a fire storm that raged through hundreds of poorly maintained, overcrowded, aging buildings. In the aftermath of the fires, those left homeless were forced to relocate to adjacent neighborhoods. As the problems of overcrowding and poor maintenance were transferred to the receiving neighborhoods, so was the threat of building destruction. A cycle of decay, burnout, and population movement was set in motion that has continued unabated. An increase in community pathologies, such as violence and drug abuse, has followed in the wake of this cycle of destruction. Wallace (1988) explains the connection between burnout and the high seroprevalence rates in the Bronx by hypothesizing that the disintegration of certain key neighborhoods broke up previously stable networks of drug users. The greatest burnout and loss of housing occurred in the areas where members of needle-sharing networks were most likely to have been concentrated. By the late 1970s, HIV infection was probably well established in some of these networks, so that the dislocations caused by the fires “seeded” the virus throughout the Bronx, as members of these networks were routed by the fires and forced to resettle. Wallace concludes that this period of population dislocation, destruction of stable neighborhood social networks, and emergence of a variety of social pathologies, from drug use to violent death, created the niche in which HIV expanded and grew during the 1980s.

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary Several important inferences can be drawn from this body of work on community disintegration. First, the destruction of social networks that inevitably follows the widespread destruction of habitat facilitates the ascendance of behaviors that spread HIV and hampers the ability of the public health system to mobilize prevention efforts. Second, the preservation of urban habitat, or its reconstruction after it has been damaged, depends on public policy set at the highest levels of government, which are often impervious to the needs of the poor and the dispossessed. Third, the disintegration facilitates not just one but many epidemics, which can act synergistically so that each speeds the propagation of the other. These linked epidemics are best understood as a common product of an unhealthy ecosystem. In short, to the extent that the disintegration of community is the cause of the spread of HIV in inner-city communities, the rebuilding of communities is necessary for the control of HIV infection, as well as for the control of the linked epidemics of violence, substance abuse, infant mortality, and tuberculosis. For this reason, the responsibility for HIV prevention research extends to agencies beyond NIH and CDC. There is much to be learned from studies of positive community efforts to respond and control breakdown. What works and what does not? The focus should be worldwide. Learning from demonstration programs in disintegrating communities in Asia, Africa, and Latin America may provide models for disintegrating communities in the United States, since this is a global phenomenon. First we have to learn which strategies are specific to the social context and which can be generalized. Information from ethnographic evaluation and cross-cultural comparisons based on participant observation should be particularly useful in planning the necessary basic population-based studies of migration patterns, risk behaviors, and infection rates. A Community Undergoing War and Low-Intensity Conflict War and low-intensity conflict occur with distressing frequency in the Third World. In the 1970s and 1980s, 43 countries experienced armed conflict (Kidron and Segal, 1981; Lalou and Piche, 1994); the countries involved had a combined population of approximately 1.5 billion. None of these wars was fought in Europe, North America, or Oceania. Zwi and Ugalde (1989) describe political violence as a pervasive yet neglected issue of public health in the Third World. They note that the effects of violence on health may be direct (inflicting death, disability, and psychological stress; destroying health services; and displacing communities) or indirect (disrupting food production, housing, and sanitation; generating famines; creating large

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary numbers of orphans, street children, and refugees; and eroding innovative health policies in favor of increased military expenditure). In medical terms, these conditions translate into lowered immune resistance from synergies of malnutrition and infection, an increase in the most common communicable diseases, like malaria and tuberculosis, and the spread of blood-borne and sexually transmitted diseases (Noormahomed and Cliff, 1987). In epidemiological terms, armed forces act as transmitters of HIV between infected groups and the general population (Baldo and Cabral, 1990). Whether in regular armies, militias, or groups of bandits, these young, single men attract professional sex workers to their barracks or kidnap women from villages to provide sexual services in their camps. Many use drugs, and when injured in battle, they require blood transfusions; blood supplies are often drawn from their own ranks. War and low-intensity conflict are one end of a continuum of violence that stretches to domestic assault. Women are especially vulnerable to the use of force or the threat of violence. They are subject to rape in war zones, in refugee camps, and in their homes. Until recently, they were not protected by human rights law, that did not consider rape a war crime or domestic violence a violation of women's rights (Bunch and Reilly, 1994). Recent events in Bosnia and Rwanda demonstrate the deliberate use of rape in civil war, and it can be assumed that the 1994 conflict in Rwanda resulted in the uncontrolled spread of HIV. HIV/AIDS prevention and intervention are especially difficult in these high-risk situations. Reestablishing peace and restoring public health services would seem to be immediate priorities. Without primary health care to deliver safe medical treatment, including uncontaminated blood and sterile needles, the provision of information on sexually transmitted diseases and AIDS and the supply of condoms will have limited effect in war zones. Because the concept of community is necessarily broad, the research needs for different types of high-risk communities will vary, but for all communities, contextual analysis (analysis of environmental factors such as neighborhood and community variables) can be a useful method (Sampson and Lauritsen, 1994). For example, for disintegrating communities, there is a need for a contextual analysis that would explore issues of community collapse and HIV infection in metropolitan areas other than New York City. Geographic modeling could help explain how community-level dynamics affect individuals and their social and family networks. Of particular interest would be the examination of the movements of individuals into and out of U.S. urban

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary centers. Better knowledge of these movements would be invaluable in helping to understand the sociogeographic variation in the HIV/AIDS epidemic (and other related epidemics) in a variety of communities. Medical geography, social ecology, and other disciplines have a great deal to offer in the explication of the mechanisms by which HIV infection is spread within and between communities. The general patterns of spread must be analyzed for each area. For example, examinations of local and regional patterns of spread in the United States have identified differences in the rates and patterns of spread in San Francisco, which has experienced a predominantly gay epidemic (see the story of Mark in Part II and the story of the gay community in Part III of this report), and the South Bronx, which has experienced an epidemic among and around intravenous drug users, fueled by the area's social collapse (see the story of the disintegrating community in Part III). Situations affected by war and low-intensity conflict will have patterns different from either of these. Further analysis of this kind of place-to-place variation holds the promise of enhancing our knowledge of the “social” course of the disease and assisting us in locating new points of intervention (Smallman-Raynor, Cliff, and Haggett, 1992.) Social analysis shows that while some mechanisms by which HIV spreads are shared across communities, other mechanisms may be specific to particular communities. The above examples of disintegrating communities and warfare coupled with immigration support the concept that the virus is spread by migration. In addition, the pattern of spread may be explained by alternative mechanisms, such as the infection of previously uninfected subpopulations within a geographically confined area, which is perhaps more true of the spread in some gay communities. The differences in social history of these communities needs to be highlighted because such differences are likely to affect efforts to provide preventive interventions. The focus in this section of the report has been on adverse structural processes that have facilitated HIV transmission. Such a focus on macrolevel forces does not mean that HIV/AIDS research is limited to passive surveillance or to microlevel preventive interventions. Rather, as the next section of this report will describe, forms of intervention have been developed that aim to alter at-risk behaviors that are embedded in social contexts.