PART II

Learning from Lives: Individuals Within a Social Context

The story of HIV/AIDS cannot be told only with statistics, theories, and models. The story involves harsh realities in individual lives. Policymakers, researchers, and advocates can learn from quantitative data, but they can also learn from ethnographic and narrative studies of the lives of individuals who are infected with HIV. Such learning can be greatly assisted if these lives are interpreted by using theoretical and scientific concepts and methodologies of the social sciences. Recognition and understanding of differences in context is critical to designing effective preventive interventions.

The very nature of the debate about AIDS intervention deserves reexamination. The discussion has been highly focused on individual responsibility, personal morality, and psychology. As researchers develop an increased understanding of the importance of social forces on individual practices, perhaps they will expand their focus and consider new options for more effective interventions that can take advantage of the critical junctures where social behavior generates individual risk.

There is a tendency in our society to isolate experiences and problems. However, one insight that has been gleaned from the AIDS epidemic is that individual behavior can not always be isolated from the social context. To do so often reflects the limitations of our own cultural understanding. Most preventive intervention models for AIDS have been oriented toward individuals, and they are now rightfully being challenged. Models of social intervention may be even more relevant, because—as this report will soon reveal in the stories of Mark, Janice, Acéphie, and the commercial sex workers in



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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary PART II Learning from Lives: Individuals Within a Social Context The story of HIV/AIDS cannot be told only with statistics, theories, and models. The story involves harsh realities in individual lives. Policymakers, researchers, and advocates can learn from quantitative data, but they can also learn from ethnographic and narrative studies of the lives of individuals who are infected with HIV. Such learning can be greatly assisted if these lives are interpreted by using theoretical and scientific concepts and methodologies of the social sciences. Recognition and understanding of differences in context is critical to designing effective preventive interventions. The very nature of the debate about AIDS intervention deserves reexamination. The discussion has been highly focused on individual responsibility, personal morality, and psychology. As researchers develop an increased understanding of the importance of social forces on individual practices, perhaps they will expand their focus and consider new options for more effective interventions that can take advantage of the critical junctures where social behavior generates individual risk. There is a tendency in our society to isolate experiences and problems. However, one insight that has been gleaned from the AIDS epidemic is that individual behavior can not always be isolated from the social context. To do so often reflects the limitations of our own cultural understanding. Most preventive intervention models for AIDS have been oriented toward individuals, and they are now rightfully being challenged. Models of social intervention may be even more relevant, because—as this report will soon reveal in the stories of Mark, Janice, Acéphie, and the commercial sex workers in

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary Thailand—social contexts can induce risky behaviors. The hope is that changes in the same social context can help modify behavior. When the onset of AIDS is framed more broadly than as a result of voluntary sexual acts or drug injection, personal responsibility becomes only one part of the picture. When behaviors are influenced, coerced, or socially constrained by partners, community norms, or political and economic circumstances, a collective or community responsibility becomes relevant. The following stories and vignettes were presented at the workshop or provided by individual committee members. They are included here to illustrate these points and to orient readers to the “real world” phenomena that confront the design and implementation of HIV/AIDS preventive interventions. Understanding such phenomena on an operational basis and designing strategies that effectively reduce at least some of the multiple, and often overlapping, barriers these phenomena present to public health interventions is the goal of social and behavioral science. MARK'S STORY: A YOUNG GAY MALE IN SAN FRANCISCO HIV seroconversion rates in San Francisco are estimated to be 2.6 percent per year for gay men 18 to 29 years of age, with 28.9 percent of the men being seropositive by age 27 to 29. The following case history describes a typical young gay man new to San Francisco. His name is Mark, and he is 19 years old. He was interviewed at an Sexually Transmitted Disease (STD) clinic. Mark arrived in San Francisco shortly after graduating from high school; he is originally from Modesto, California, population approximately 100,000. Mark was discovered having sex with a high school friend in May. Mark's father confronted him and demanded to know if he was gay. Mark had not previously thought of himself as gay but could not deny it. His father told him “No queers in my house” and set an ultimatum: Mark must stop any sex with males or leave home. Mark finished high school the next month and left home. During his last month at home he and his father did not speak. His mother did not intercede. Mark arrived in San Francisco with no place to live and $500 in savings from part-time work. Mark had previously visited the city with friends and knew that the Castro neighborhood was gay-friendly. On arrival, he went to the Castro neighborhood, where he met several other young people. One other young man, Stan, suggested that he move in with him until he got settled. Mark stayed with Stan for only a month —during which time he found a job and a place to share. He

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary is living in a part of the Mission district where many younger people live. The nearby commercial area includes cafes, coffee houses, and bars frequented by many younger adults who describe themselves as leading "alternative" lifestyles (sometimes labeled as "urban aboriginals ”); it is not considered to be a gay neighborhood. Mark shares his house with two other young males (one homosexual, the other bisexual) and one young self-identified lesbian. Mark primarily associates with other young self-identified gays and bisexuals who have left home. He states that he and most of his friends do not feel comfortable with members of the “gay community” found in the Castro neighborhood—that they are older, too casual about sex, and don't care about his concerns. Mark and his friends complain that older men, by which they mean men over age 25, are not as concerned about the emotional consequences of sexual activity as are younger gay men. Most of Mark's friends work in low-paying retail positions and live in large communal houses. On the weekends, he and his friends attend raves (ad-hoc alternative music events that attract 200 to 1,000 younger people and last for up to 24 hours) or other large social gatherings, where they all regularly use Ecstasy (a mildly hallucinogenic stimulant). In the four months he has been in San Francisco, Mark has had sex with six other males, all of whom were under 21. He says that two of these people have been “boyfriends.” He meets his sex partners at raves and on the street. He says that he wants to feel something special about any person he has sex with and that he would like to find a permanent boyfriend. Mark had anal intercourse with four of his recent sex partners. He tried using condoms with two of the new partners, but both of them discouraged it, saying that they were HIV-negative. Mark has not been tested for HIV and feels he is not at risk, saying that “only older men have AIDS.” He has not used condoms with the two partners that he considers boyfriends; he says that using condoms would imply that he didn' t trust them. Mark reports that he occasionally feels uncertain about his sexual identity, feels alienated from the larger gay community in San Francisco, feels consistent pressure to use drugs, has trouble using condoms on a regular basis, and feels lonely and in need of a regular partner. Mark appears to know how HIV is transmitted but seems to consider himself not at risk. Mark currently has no career or education plans.

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary JANICE'S STORY—FROM “THE HEART OF THE MATTER” “The Heart of the Matter,” a film about women and AIDS, features the story of Janice Jirau, an African American woman who died of AIDS. Janice and her family worked with the producers to document many moments in her life, as well as her reflections on the past. Thus, the filmmakers were present when she spoke at an African American church in New Orleans. Janice described the rejection that marred her childhood: “I came to the church, but because I was 13 and I had a baby, I was labeled a bad girl. They did not know that I had gotten that baby as a result of dysfunction within my family, that I had been abused, that I came to them to embrace me, and they scolded me and threw me way.” This early rejection by the church, added to the pain of family dysfunction, left Janice vulnerable in other relationships. When she learned that her husband was HIV-positive, she felt unable to insist on condom use. Later, when she learned of her own infection, she still put his needs before her own. “When I found out I was HIV-positive, I couldn't talk to my husband about it too much because he was dealing with his own anger and how I was going to accept being, you know, that he gave me this. I was so busy trying to make sure that he knew that I didn't blame him, that I really couldn't express all of what I was feeling to him. So I went in the bathroom when I came home, I remember I went in the bathroom, and I got on my knees, and I just cried, and I asked God, I said, I can 't ask you to take this away because you allowed this to happen to me, but if you will, if you will, please, let this—you know, I felt like Jesus Christ at the cross—let this cup pass if it's your will.” Janice's story of childhood victimization interfering with later decision-making about safer sex practices is similar to the stories of other women and men scarred by childhood abuse (Laumann, et al., 1994, Chapter 9). Abuse victims often are unable to make the kinds of serious and fundamental decisions that others in more protected segments of society can make. Revictimization patterns can become life-long, and this situation presents researchers with an important challenge: the need to develop preventive interventions that are sensitive to the long-term effects of early abuse.

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary ACÉPHIE: A YOUNG WOMAN FROM HAITI When the inhabitants of a valley in Haiti were told that the land they lived on would be flooded in order to build a hydroelectric dam, they did not believe that such a thing could happen. On the day the valley was flooded, these peasants finally left their homes and were forced up into the hills. They left their successful farms for steep and stony hills covered with what they called “rocks with teeth.” They went from decent housing to shacks that “fooled the sun but not the rain.” They abruptly descended into poverty, with all of its accompanying effects on health and general well-being. Acéphie was born to two “water refugees,” a term the displaced peasants used to describe themselves. She went to school but only managed to get through a couple of grades. Her family was sinking deeper and deeper into poverty. Acéphie, one of six children, could see that there was no way her parents could help her, and she desperately wanted out. At age 19 she responded to the overtures of a soldier and entered into her first sexual union. It was a straightforward, calculated decision: She hoped that the soldier could provide her and her family even a modicum of financial security. This was in spite of the fact that the soldier had a wife and children and was known to have more than one regular partner. The relationship was short-lived, and eventually Acéphie went to Port-au-Prince, as did so many others when the rural hunger became unbearable. There she found a job as a housekeeper. At age 22 she began her second and final sexual relationship, with a man who chauffeured a small bus between the central plateau and Port-au-Prince. Two years later she discovered she was pregnant, which displeased both her partner and her employer. She returned to her local village in the third trimester of her pregnancy. After giving birth to her daughter, Ac éphie was sapped by repeated opportunistic infections, and she died of AIDS at age 27. Acéphie's first sexual partner, the soldier, died of AIDS a few months after they parted. Before he died, he infected a number of people—children and adults—with HIV. His wife, who is now the partner of another military man, is much thinner than she was a year ago and she has had a case of herpes zoster; two of her children are also HIV-positive. The soldier had at least two sexual partners in rural Haiti other than his wife and Acéphie. One of them is HIV-positive and has two sickly children. Acéphie's child is now also ill. The father of Acéphie's child, apparently in good health, is still driving his bus around Haiti. The tragedy does not end with the spread of the

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary epidemic, for the emotional toll on the affected families is also severe. Shortly after Acéphie's death, her father committed suicide by hanging. How common is Acéphie's experience? Having only two sexual partners certainly makes her sexual history different from the sexual histories of agematched HIV-infected women in the United States. But in Haiti (as in many parts of Africa), there is very little about Acéphie's story that is unique at all and studies suggest that Haitian girls are often infected by their first and only partner (Desvarieux and Pape, 1991). The risk factors for HIV infection in rural Haiti would not typically be published in the biomedical literature, even on Haiti, in part because the factors are specific to the local economic circumstances, but also because the mechanism by which inequalities increase the risk for AIDS are not well studied. Poor women in Haiti are at very high risk despite their serial monogamy and avoidance of injection drugs. What makes them most at risk is their exposure to a combination of extreme poverty and economic inequality. Many are forced into unfavorable sexual unions by their poverty. Their involvement with soldiers and truck drivers, who are paid on a regular basis, is a matter of survival; yet that social nexus proved to be the critical step in the spread of HIV in rural Haiti and quite possibly in other developing-world settings of extreme poverty. The life histories of people like Acéphie speak to the need for research models that can incorporate large-scale social and economic forces but at the same time do not obliterate the peculiarities of specific places, specific cultures, and specific individual experiences. While poverty is one of the significant risk factors in this scenario, the professions of the partners may be the key risk factor. The relative security and accompanying higher status of soldiers and truck drivers confer options for widespread sexual access. After all, the soldier was infected first; then Ac éphie became infected. Preventive interventions that target the sexual behaviors of the Haitian soldiers may be a plausible public health strategy. COMMERCIAL SEX WORKERS IN THAILAND Recent studies of the mobility and migration of commercial sex workers in Thailand show that the women's choices are constrained by broad historical forces as well as by more local cultural directives. To summarize a complex account, Thailand is in the midst of a major demographic transition, in which the young must increasingly care for a growing aging population. At the same time, Thailand's agricultural

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary base, the cornerstone of the economy and society, is being replaced by an industrial sector that increases the disparity in wealth between rural and urban areas, which results in a flow of the rural poor, especially women, to the cities. High female urban migration is linked to the different familial expectations for daughters and sons. Children have a strong sense of moral indebtedness to care for aging parents. Sons, however, can fulfill this obligation by staying at home, providing local labor, participating in family economic schemes, or (in an option not available to their sisters) by being ordained as a monk. For women, marriage has long been both the primary pathway to social mobility and a means of providing for parents. Thus, girls are expected to “marry up,” thereby attaching useful sons-in-law to their natal families. Poor rural women whose families cannot afford to invest in their education, which would equip them for the labor market, find their options limited. For ethnic minorities, the choices are even more constrained. The eradication of opium, their most lucrative crop, as well as the ongoing wars on the borders of Thailand and the Shan States of Myanmar, have led to a situation in which many women in low-priced brothels in Thailand are from the Shan States. Thus, both broad historical forces and more local cultural imperatives have funneled women from the north of Thailand and the border states into commercial sex work in Thai cities and towns. Northern Thai women, who have a command of Central Thai language, in addition to friendship networks throughout the country, are in a better position to find employment in higher-paying establishments, where they have somewhat more control over their daily lives, as well as a greater likelihood of marrying economically stable partners. These two categories of women (whose life histories document these sad events) are thus propelled into risky situations by similar historical forces, but more local conditions determine the length of time a woman might stay in the sex industry, the type of establishment in which she works, and her ability to protect her health. By combining life history and an analysis of the political economy, the Thai example illustrates the determining forces that place women in high risk situations and demonstrates the local and distant constraints that need to be appreciated when interventions are considered. It also describes local junctures where intervention programs can be targeted, while simultaneously showing the institutional constraints that must be overcome if such programs are to be effective (Bond et al., in press).

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary Research on how macrolevel social forces and the local interpersonal environment affect individuals has great potential for opening up new strategies for interventions. A considerable amount is known about the beliefs, behavioral practices, and psychological variables that might influence a person's choices under conditions where people have choice, but much less is known about the psychological variables of social contexts that constrain choice. How do individuals get into circumstances that limit their choices? How do some social forces, such as network interactions, constrain choice for whole groups of people? The four stories illustrate ways in which social variables in all contexts—dyadic, cultural, environmental, economic, and political —can constrain choice regarding health-protective behavior at the individual level. The choices of Janice, the African American woman, were constrained by a combination of historical forces and social norms regarding her place in the community and her obligations to her husband, and the choices of Acéphie and the Thai women were constrained by large-scale social and economic forces. Some historical forces may be beyond the reach of AIDS primary and secondary prevention efforts. Social norms, on the other hand, are legitimate targets for preventive intervention. Social norms are often invoked to explain the processes by which social networks and systems influence the behavior of individuals. However, for the purposes of changing individual behavior, knowledge of social norms can be useful when coupled with understanding of an individual's goals and objectives. Individuals pursue objectives by engaging in behaviors they think will enable them to obtain these objectives. Social norms specify the form these behaviors should or should not take, in a particular social setting if one is to attain the desired objective. Members of social systems also specify, often implicitly, the consequences of disregarding the norms. From the social-behavioral perspective, individual behavior is influenced by the contingencies of reward and punishment that norms describe, rather than by the norms themselves. Therefore, if we want to change behavior by changing social norms, we must change the action-outcome expectations that underlie social norms (see the background paper by Craig Ewart). This perspective suggests two major issues for research. First, we need to understand the action-outcome contingencies of a given behavior within diverse social contexts. Simply defined, action-outcome contingencies are the negative as well as the positive social consequences of a behavior. For example, the decision to get tested for HIV antibodies can be constrained at the dyadic level by its implications regarding interpersonal trust and by expected negative consequences of learning that one is HIV-positive, such as abuse by one's partner, dissolution of the relationship, or stigmatization by family, friends, and important reference groups. The decision to be tested can

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary be constrained at the environmental level by the physical location of the testing center. People are unlikely to go to a center for testing if it is located in their neighborhood where their confidentiality may be inadvertently violated because they are seen there by friends or neighbors. At the policy level, the decision can be constrained by regulations concerning reporting of HIV antibody test results and the attendant risk of violations of confidentiality or the imposition of state-mandated quarantine. Further, as the four stories illustrate, the social and economic consequences of being tested for HIV antibodies can vary markedly by gender, age, and culture. Second, we must learn how to change the action-outcome contingencies that constrain the initiation of self-protective behaviors within diverse social contexts. What are the best methods for changing action-outcome contingencies within sexual partnerships, networks, communities, and macrolevel policies? For example, how do we reduce barriers to preventive care for persons at risk for HIV, including stigmatization, breaches of confidentiality, and economic costs associated with transportation and child care? How do strategies for reducing barriers to preventive care differ by setting (e.g., work place, public assistance), gender, age, and culture? Learning about individuals within social context—family, local community, and macrolevel economic, political, and cultural forces—requires sophisticated interdisciplinary research. Ethnography, an underutilized research method, can provide contributions grounded in descriptions of local experience and culture that will be valuable for understanding how and why people do things that either protect them or place them at risk. For example, behavior that may seem to be irrational when viewed from a macrosocial perspective from outside a high-risk community, may be more understandable when viewed from within that community. The behavior may be a form of resistance to authority or may be motivated by self-interest, and it may result from a long history of deprivation and exploitation. For example, it might seem irrational for injection drug users who have been pushed out of one neighborhood by police pressure to start sharing syringes with “sociometric core” members, who are at the center of a set of linkages in another neighborhood and who are particularly likely to be infected with HIV. Ethnographic research has shown, however, that this is a rational reaction to the illegal, and hence unregulated, nature of drug markets. Newcomers will be sold only materials other than drugs, unless they are vouched for by an insider. The easiest way to get local backing is to share drugs and syringes. Overcoming community resistance to public health programs requires an entirely different approach to health education and public health intervention—a strategy that targets resistance as a central problem. Methodologies will be needed to determine how the effect of changes in macro-level social

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Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary forces can be tested in local settings. This will require further elaboration of existing interdisciplinary frameworks of social analysis or the creation of new ones.