Social Sciences and AIDS

Ana Amuchástegui Herrera

Introduction

According to Jonathan Mann(1,2), by the year 2000, 90% of the AIDS pandemic will be situated in developing countries, while most of the resources for prevention of HIV infection, as well as for the cure and care of people living with AIDS, will be concentrated in developed countries. Despite all this, there has been a significant decrease in the flow of international help since the beginning of the 1990s, precisely for those sectors and countries in which the epidemic is growing more rapidly.

For developing countries, as is the case of the nations of Latin America and the Caribbean, preventive interventions are still the most powerful weapon against the transmission of the virus. However, international efforts to reduce the threat of AIDS have decreased regarding the needs of developing countries because the epidemic, in many cases, has become merely another issue to be addressed within the context of global economic development. This is particularly true for the Latin American and Caribbean region, whose epidemiological situation, which accounts for 13.4% of the total AIDS cases in the world, is not considered a priority in terms of resource allocation compared to the alarming dissemination of the virus in Africa and Asia, which accounts for 86% of world cases(3).

During the last decade, there has been an important shift in the study of the social aspects and impact of HIV/AIDS and in the critical reflection about the epidemic, from the standpoint of both political theory and practical experience. Such is the case of studies that try to understand and tackle the social, economic and political determinants of the epidemic, as well as the innovative designs of preventive interventions, based on the understanding of AIDS as a social problem that needs to be addressed at the community level.

The present document provides a general vision of the state-of-the-art about social aspects of the HIV/AIDS epidemics, both from the point of view of its determinant role in sexual behavior and the impact of HIV/AIDS on individuals, families, communities and societies that live everyday with the threat of the virus.

This recapitulation will focus on Latin America and the Caribbean, bringing about contributions that come from other regions of the world and which have resulted useful both for the production of knowledge about the social factors related to the epidemic, and for the design of effective models of prevention and intervention.

In the first part of the document, there will be a review of the main developments in the area, as well as a description of the questions that remain unresolved, both in terms of research and intervention. The second part will discuss research topics and thematic developments that were reported in the Vancouver Conference, as well as the best abstracts and presentations relevant to Latin American realities. The most important conclusions for decision-makers will be discussed in the third part, and finally there will be a section of recommendations.

Social sciences and AIDS: recent developments, research questions and intervention models previous to the Vancouver Conference

The AIDS pandemic has forced different sectors of the global community¾ scientists, governments, activists and general population¾ to look at, study and taje action on something that during centuries was considered a private sphere of individuals: sexuality. This approach has not been easy, because sexuality is one of the most complex processes of human experience and neither its study nor its change seem to follow straight or predictable paths.

In the beginning of the epidemic, it was physicians and epidemiologists who addressed sexuality, followed immediately by social psychologists. Only recently have anthropologists and sociologists joined research and intervention on HIV/AIDS, bringing into the field a more complex vision of what constitutes sexuality and risk in modern societies.

According to a classification by Cáceres (1996)(4), research and intervention efforts for AIDS prevention that have been carried out in Latin America have focused, generally, on the following issues:

- Prevalence and incidence of HIV infection
- Prevalence of well-established factors of risk of HIV infection
- Prevalence of knowledge, attitudes and practices regarding sexuality and risk of HIV infection
- Socio-cultural contexts, including sexual cultures (few studies)
- Evaluation of interventions (few studies, mainly about individual behavior)(I)

This body of research has generally followed two different methodologies that in turn produce different and complementary sorts of information about the issues related to infection and risk.

First, quantitative methods, based on a statistical referent, seek to establish ratios within a sample regarding a certain category, or possible relations among variables. These studies attempt to answer questions like "how much?, how many?, how frequently?", which, in the case of sexuality, apply to, for instance, sexual practices like heterosexual intercourse, anal intercourse, oral sex, the number of sexual partners in a given period of time, or the prevalence of the use of condoms. Other relevant issues have been the prevalence of STD's, the use of contraceptives, and beliefs about reproduction and fertility, and attitudes toward HIV infection and AIDS.

Most of the research on sexuality, even in the recent past, has been survey-based documenting sexual attitudes and behaviors in different settings. Specially during the 1980s, these studies responded to the urgent need of information regarding basic aspects of the sexual behavior of individuals in different social contexts(5-7) . Such body of research has allowed us to know about the sexual behavior of large populations and to determine the degree of their exposure to HIV/AIDS information, besides measuring the impact of educational activities and media campaigns.

In addition to stimulating discussion and debate about sexuality, some quantitative studies have developed instruments to investigate new problems like sexual networks and power associated to gender(8, 9). Furthermore, many surveys have focused, rather than on sexual behavior, on understanding the dynamics of sexual interaction within specific communities(10).

Some of the most significant developments in this kind of research have to do with the findings of unexpected diversity regarding sexual practices. For instance, Aggleton (1996)(11) shows that surveys carried out by WHO/Global Program on AIDS in developing countries shed information about the great diversity in Sub-Saharan African countries in terms of frequency of intercourse with non-main partners, condom use patterns, and sex in exchange for money or any other material benefits(12). Such differences suggested caution against transplanting HIV/AIDS preventive interventions from one country to another, even within the same region.

The second group of research methods, the qualitative methods, seek to investigate the social conditions in which sexual practices are performed and the meaning populations give to them, in the understanding that both are underlying behavior determinants. This body of knowledge intends to produce in-depth information, rather than precision or prevalence, because it does not resort to sample theory. The questions it tries to answer are "how?", "in what circumstances?", "why/why not?". Typically, they are carried out with previously defined groups, like sex workers, migrants or homosexual groups, in order to know the social and cultural aspects of risk behaviors.

The amount of qualitative studies (nonetheless inferior to that of quantitative research) has grown recently in response to comments from social scientists and activists, who argue that research and intervention should addresse not only the measurement of incidence and prevalence of sexual attitudes and behaviors, but also the analysis of social, cultural and political contexts in which sexual activity is constituted.

Such considerations emerge from the idea that surveys and interventions based on models of individual behaviorial change presuppose the existence of an autonomous subject whose decision-making on sexual activity is fundamentally of a rational kind. However, a great number of studies have suggested that the phenomenon is more complex and that it is shaped by the person's economic, social and cultural conditions, in addition to any other psychological considerations(13, 14). "The processes that conditioned their [the respondents] practices, the nuances they had, the inconsistencies in the knowledge-attitude-practice sequence, remained unexplained. They were an authentic 'black box'"(II) (15).

For example, in a study carried out with life stories of women who attended a drug rehabilitation clinic in New York, Worth (1996)(16) found that, though having a high degree of knowledge about HIV transmission and prevention, most of the interviewed women avoided the use of condoms because they considered them to interfere with the search for romantic love. Many of them thought that proposing the use of condoms to their partner would suggest infidelity and thus the absence of a project.

According to a group of studies undertaken by the International Center for Research on Women(17) in developing countries in Africa, Asia and Latin America and the Caribbean, researchers found that the social costs of HIV prevention for young women could be as high as to counteract any motivation for change in behavior. For instance, in Brazil, two thirds of the respondents considered they would feel uncomfortable to propose the use of condoms because it would suggest a disease or infidelity(18).

On the other hand, even if the biological susceptibility of any individual to HIV infection is a fact, epidemiology shows that certain social groups are more vulnerable because of their social, economic and cultural conditions. Such is the case of women, young people, the poor in both industrialized and developing countries, and stigmatized groups like homosexuals, bisexuals, gays and men who have sex with men. Thus, the concept of "social vulnerability" became increasingly important and supported the argument for the need to focus research and prevention efforts on broader areas than individual behavior.

Social vulnerability is expressed, for instance, in contexts in which women are economically dependent on their husbands or where it is expected for women to get married (which is the case of many women in Latin America and the Caribbean) and where families of origin do not support separated or divorced women in a consistent manner. Because of this situation, women may even give up the use of condoms because of the status and security that, although limited, marriage gives. Besides, one of the consequences of proposing condoms could be verbal or physical abuse or the threat of abandonment(19).

In summary, even though most of the behavioral research on population, reproductive health, HIV/AIDS and other STD's has focused on studying the incidence of sexual behaviors and beliefs, it becomes increasingly clearer that such information, on its own, is insufficient to advance the understanding of sexuality as a complex social phenomenon.

As a response to this, since the beginning of the 1990s, the attention of researchers has turned to the social and cultural systems that shape and structure the contexts in which sexual interaction takes place and is given meaning by its actors. An array of qualitative methods has joined quantitative studies, in order to understand, in greater depth, sexual cultures, identities, and communities.

Concerning prevention of HIV infection, it is known that information-education-communication models promote awareness of the existence of AIDS and its transmission, but they have not resulted in risk behavior change, because the relationship between knowledge, beliefs and behaviors is not unilateral. In a review of the strategies of AIDS prevention and control carried out in Mexico, Sepúlveda (et al, forthcoming)(20) says that "massive campaigns do not change behaviors significantly, but they are useful to keep the population alert and to create an environment that will make more specific and directed interventions acceptable" (III). However, "it is indispensable to develop interventions that touch deeper aspects of individuals." These deeper aspects imply the understanding of the contexts of sexuality, in terms of its emotional, social, cultural and economic levels.

On the other hand, blood screening has been one of the most efficient options to control AIDS(21) in developing countries, in addition to its usefulness in seroprevalence surveillance and in promoting confidence among the population regarding health services and strengthening secondary prevention in persons infected by blood transfusion. In the case of Latin America, prevention through blood screening has influenced significantly the decrease of the epidemic(3).

This is not the case, however, of sexual transmission, which is responsible for most of the cases in the region. There are few studies that analyze the cost-effectiveness of specific interventions in developing countries, but it is important to stress that it is not wise to wait for them in order to start prevention programs. It is advisable, however, that preventive designs include any kind of evaluation regarding their effectiveness. In any case, it is demonstrated that interventions are more cost-effective at the beginning of the epidemics, because early introduction of control and prevention measures decreases the seriousness and cost of the epidemic in the long term(22).

In summary, before the Conference in Vancouver, the situation of social science research and intervention on HIV/AIDS in Latin America and the Caribbean included the following aspects:

  • There is a wider understanding about knowledge, attitudes and behavior patterns of the region's population regarding HIV/AIDS
  • There have been behavior changes among sexual workers, men who have sex with men and health providers, although not enough to decrease the spread of the infection significantly. These changes, however, coincide invariably with preventive interventions.
  • Immediate and directed attention is needed toward specific populations, according to seroprevalence in each subregion of Latin America and the Caribbean:

- homosexual and bisexual men
- men who have sex with men
- women
- adolescents
- sex workers

This means conducting both research on social and cultural determinants of each group regarding risk behavior and evaluations of specific preventive interventions.

Even though prevention programs have given particular relevance to partner reduction, non-insertive sex and adequate use of condoms, these programs should be complemented with realistic messages that offer other options like abstinence, monogamy and delay of sexual initiation.

Review of the XI International Conference on AIDS, Vancouver, July 1996. Social Sciences: Research, Policy and Action

The main goal of the Social Sciences: Research, Policy and Action Track was, as the rapporteur Purnima Mane(IV) said, to evaluate the social impact of HIV/AIDS and the responses of individuals, communities, societies and cultures to the epidemic. This review was carried out at two different levels:

* macrosocial level
* policy implementation and evaluation
* consideration of structural factors that determine vulnerability to infection
* social and economic consequences for specific populations
- homosexual and bisexual men, men who have sex with men
- intravenous drug users
- sex workers
- women
- young people
* microsocial level
- design, implementation and evaluation of prevention and attention programs in specific settings

In a general recapitulation about the social impact of HIV/AIDS at the global level, Parker (1996)(23) considered that there has been a change in the response of the international community to the epidemic. At the same time that we have witnessed a decrease in the global struggle, there has been an increase in critical reflection on the social, economic, cultural and political causes of HIV infection. There has been a revision of dominant models and theories that have guided the preventive work, which produced a shift from informational and individual notions of AIDS education, to multi-dimensional levels of collective empowerment and community mobilization, as the most effective strategy of sustained and long-term response to the epidemic.

Also, a new understanding has been reached that the struggle to respond more effectively to HIV/AIDS is part of a broader and more permanent effort that does not involve individual behavior only, but social change as well, because it must address issues that underlie the epidemic, like social injustice and inequality, which have created the conditions for the dissemination of HIV.

Even though the infection spread rapidly, escaping the limits of epidemiologically defined risk groups, it did not affect the population at random. "Albeit our rhetoric during the mid-eighties, HIV/AIDS has never been a democratic epidemic" (Parker, 1996)(23). For example, a group of seventeen studies that analyzed the relation between women's human rights and their vulnerability to HIV showed that there are significant barriers that hinder their ability to protect themselves, like the lack of economic independence, of information and of legal recognition, as well as the absence of prevention methods controlled by women(24).

To accept this reality has meant, also, to relativize the notion of individual risk and to consider that social vulnerability is not only crucial to understanding the epidemic, but to any strategy capable of stopping its spread. This is not to deny the biological susceptibility of any individual to be infected, but it allows to contextualize it within a social reality that is fundamental to all affected populations. It neither urges to abandon short term efforts, but emphasizes the need to articulate such efforts within a global policy of transformation of structural conditions that allow for the spread of HIV.

Josef Decosas (1996)(25) showed the results of crossing the Human Development Index (HDI, developed by the UN) and HIV infection. The HDI takes into account a group of variables in order to determine the degree of development of any population:

- life expectancy at birth
- literacy
- formal education
- income

The author found a significant relation between a low HDI and HIV infection, which indicates that members of poor groups and societies are at higher risk of infection than those that have a higher HDI, and that sexual behavior does not explain, for example, differences of seroprevalence between Denmark and Nigeria. Biological, cultural and structural factors account for such differences. Following the same example, among biological factors, there is high prevalence of STD's (which increase the risk of HIV infection between three and five times) among Nigerian women and the difficulties to get medical attention. Also, Nigerian culture favors older men to have young girls as sexual partners, establishing thus a power relationship that would make condom negotiation difficult for the girl. Finally, among structural factors, massive migration, because the lack of opportunities exposes workers to further risks.

Decosas concluded by saying that responsibility of the struggle against the epidemic lies mainly in local governments because, if they do not show political will, they will only waste the international resources allocated to them. The solution, he said, is in the commitment and decision of national governments.

Macrosocial level: national policies

In this context, which was discussed in terms of the practical consequences of its application to short-term intervention programs, the relative success of national policies against AIDS was mentioned repeatedly with regard to the governments of Uganda, Thailand and Australia, countries which have considerably reduced their infection rates during the last years. In all three countries, authorities have shown a committment to the struggle against the epidemic and have shown a strong political will to implement a general strategy.

In a session about national policies, the participants stated that the first step has been the recognition that AIDS is a public health problem and to act accordingly. For instance, in Australia(26), the government took charge of blood screening in 1985, but it took longer to assume the responsibility regarding sexual transmission. Early definition of epidemiological risk groups produced a paradoxical effect in affected populations, because even though it further stigmatized the gay community, it also urged its mobilization and organization against the epidemic.

As Ballard(26) said, Australian authorities considered, in any case, that the community-based health model they had launched previously was effective, and decided to involve gay educators in preventive programs. Thus, the Australian government delegated some of the activities on community organizations that were interested in addressing the problem, taking responsibility through the support of such groups. This way, a kind of "citizenship of safe sex" was created in Australia, which has spread horizontally through peers rather than through vertical messages on the part of the government, therefore rooting more deeply and permanently in the common Australian citizen.

Microsocial level

People living with HIV/AIDS (PWAs) At the microsocial level of research and response to the epidemic, it was clear that, just as prevention seems to have a bright future in community mobilization, so the impact on specific groups has generated group responses for the support and care of seropositive and sick people.

During the Conference, a series of studies were presented which stressed the importance of community and groups of PWAS responses, both to improve their quality of life, and to support preventive activities. A recurrent topic in several sessions was that stigma associated to HIV/AIDS makes disclosure and group involvement difficult, and that it is urgent to work in redefining AIDS as a health problem, regardless of its form of transmission. The positive effects of these actions upon PWAS's health and the importance of using their knowledge and experience was continually mentioned, especially regarding their inclusion and collaboration in preventive and care programs.

Two examples of the above are the project TEACH in Philadelphia(27) which consists of a collaboration of seropositive people with physicians and scholars in order to construct a language about HIV/AIDS that would be accessible to the population they work with, and the cooperative Carpe Diem in Rosario, Argentina(28), which was created with the support of the Municipal Program against AIDS. In Carpe Diem, a group of PWAs produce goods for the market; therefore, they have a job, are self-sufficient and carry out preventive activities and legal counselling for the community.

Social research

Concerning social research on HIV/AIDS, it was evident during the first years of the epidemic that neither homosexual nor heterosexual behavior was directly associated to a definite sexual identity(29). This was particularly evident in studies of sexual interaction among men, particularly in non-Western countries and in minorities within Western societies. The same process happened to the traditional definition of prostitution or sex work, which was questioned by the frequency of local forms of sexual exchange for money, gifts or any other favors, that are not matched invariably with a specific sexual identity or that are not considered work(30,31).

Thus, a large part of social research is focused now on understanding the context for sexual interaction, in terms of the meanings it is given in specific cultures. Furthermore, it is radically important to recognize that there are important differences in the ways societies structure opportunities for sexual interaction, that is, the social and cultural value of possible sexual partners and practices.

Consequently, some of the issues relevant during the Conference could be grouped as follows:

a) Sexual identities, sexual communities and sexual cultures in relation to risk behavior
b) From individual risk to social vulnerability
* factors for risk behavior
* structural conditions that facilitate HIV infection in specific groups:
- women
- young people
- underserved population: street youth, migrants, ethnic minorities, indigenous peoples

c) Evaluation of prevention and intervention programs
* community-based organizations
* small group interventions
* information, education, communication
* social marketing
* hard-to-reach populations

* counselling and prevention

Sexual identities, sexual communities and sexual cultures

These shifts in research have produced more complex and also more precise sexual categorizations; for instance, men that have sex with men, because gay or homosexual identity seems to be applicable only to defined groups in developed countries and to upper classes in developing countries. One of the constant questions posed by researchers was how to contact men that carry out homosexual practices but do not self-identify as homosexuals.

This issue, relevant to some regions of Latin America because of the profile of the epidemic, was reflected in a session about homosexual men and their responses to AIDS, in which the importance of investigating risk behaviors of this population was discussed, as well as the strategies they could be using to face the epidemic.

The complexity of the issue can be illustrated by a presentation by Sánchez (1996)(32), who described a research carried out with 354 men-who-have-sex-with-men in the Dominican Republic. This research was done by the only gay NGO in the country, which sought to design more appropriate interventions within a society in which homosexuality is stigmatized. The men interviewed identified themselves in five distinct groups: transvestites, homosexuals, gigolos, bisexuals. and heterosexuals. Oral intercourse and anal receptive intercourse was reported only by transvestites and homosexuals, while the other groups reported insertive intercourse. HIV antibodies were detected in 11% of the population; 34% in transvestites; 12% in homosexuals; and 7% in the other three groups. From this experience 60 volunteers were recruited to work in preventive activities within their communities, contacting men who have sex with men (even in hiding), and carrying out educational activities with their peers, theater presentations in gay discos and search for support among community leaders.

Dowsett (1996)(33) presented an ethnographic study carried out in Sydney and Adelaide, Australia, based on 60 unstructured interviews, participant observation, focal groups with men who have sex with men, and textual analysis of gay literature. The results showed that, even though this research was focused on gay identified men, the structure of each of these communities was different, and that, in fact, these differences could account for the epidemiological profile of each of these cities. Thus, this study showed that indifferentiation of populations makes prevention ineffective and that national strategies have difficulty in having an impact on local cultures. Resistance to acknowledge the existence of gay communities¾ or of men who have sex with men¾ and failure to direct specific interventions toward these groups only helps to alienate them even more from policies directed to the population in general. The method, called "critical ethnography", proved useful in communities with scarce resources that require a quick evaluation and that try to acknowledge the importance of the community for risk behaviors, so that the unit of analysis were not the individuals but precisely the structure of the community.

Along the same line of looking for innovative ways to find out about sexual practices of different populations, some studies emphasized the need to shift its focus from individual to sexual and social networks(34), concurrent partners(35) and/or sexual relations as units of analysis, in order to have richer investigations(36) . This last study, carried out in Belgium through the national survey on sexual behavior, measured the frequency in which risk of HIV infection is taken into account in each sexual intercourse (whether through conversation, screening or condom use), and it showed that 30% of the interviewed individuals handle the risk of HIV infection in a different manner in each intercourse (not necessarily with each partner), while 29% did not handle it at all. This variation depends on certain structural conditions of intercourse; for example, screening before the encounter depended upon the place in which the partners first met and it was less frequent the more important the relationship was considered. In the same fashion, condom use was less frequent within stable relationships. The study concludes that individual factors are not sufficient to explain the differences in handling the risk of HIV infection. However, this research, by focusing exclusively on behaviors and immediate situations of their occurrence, did not analyze the social and cultural context in which this risk practices are carried out.

In a session in which reliability of self-reported behavior was discussed, one of the innovative instruments was presented in a 6-year longitudinal study(37), in which "sexual risk sessions" were analyzed as described in sexual diaries written by approximately 1,000 gay and bisexual men in Great Britain. The written information was complemented with interviews and ethnographic methods. The diary as a research instrument allows for the record of "naturalistic" expression of sexual practices, eliminating to a certain point the mistakes produced by reconstruction during an interview. The focus of this research was the volume of risk sexual behaviors, especially unprotected anal intercourse. One of its main conclusions is that, during sexual interaction, there are a series of irrational components that have not been detected by knowledge, attitudes and practice surveys. Even though during the interviews many respondents said that they "always" use condoms, the diaries showed a rather low frequency.

From individual risk to social vulnerability. Factors of risk behavior and structural conditions that facilitate HIV infection in specific groups

The discussion about social vulnerability and HIV included a larger number of Latin American presentations than the rest of sessions on social science, such as sexual behavior research and individual risk factors.

In a session dedicated to the vulnerability of young people to HIV, Cáceres (et al, 1996)(38) reported the results of a qualitative (20 focus groups and 40 in-depth interviews) and quantitative study (1200 questionnaires) carried out with young people from Lima, Peru. This study explored certain aspects of sexual culture like perceived norms, sexual initiation, sexual desire and practice, contraception and abortion, homo/bisexuality, STD's and AIDS, sexual and gender interaction, and HIV screening in a subsample.

Among the young people that were heterosexually active, 43% had never used a condom, while 57% of homosexually active respondents had never used it either. Among young women, 28% of adolescent girls and 43% of young female adults have had at least one unexpected pregnancy. In spite of knowledge about AIDS and its transmission, the participants did not consider themselves at risk. Qualitative analysis showed that roles associated to gender are changing in this population toward more egalitarian relationships, particularly in the middle classes. Female sexual initiative is not negatively valued and young men are less subject to pressures to have their sexual initiation with a prostitute. These incipient changes could produce a culture that may favor empowerment of both women and men in order to control their own sexual behavior.

Another study from Brazil(39) detected and analyzed the obstacles and difficulties of young people to use safe-sex practices consistently, as a part of the evaluation of a workshop about sexuality and AIDS in a night school from Sao Paulo. Through the collective construction and enacting of "sexual scenes", which were real-life stories told by participants, it was evident that gender inequality is a key element in the impossibility of negotiating safe-sex. Material conditions structure opportunities for sexual intercourse, like hurried and hidden encounters in public places and the price of condoms (approximately one dollar). For this poor and disenfranchised population, AIDS was mentioned only as one of the risks young people face every day. On the other hand, because of the negative way in which young people described health services, it was clear they rarely attended them, because of fear to stigma, abuse and mockery.

The evaluation of the "sexual scene" shed positive data as a consciousness-raising method among certain social groups, and as a means to face and question personal and structural barriers these people encounter when they decide to practice safe sex.

The greater importance given to other sets of social costs than to HIV infection was documented also by qualitative studies carried out with young people from Sri Lanka,(40) who showed a greater preoccupation for the loss of virginity, marriage possibilities, pregnancy and loss of reputation in the family, than for risk of HIV infection, albeit having enough knowledge about it. These cultural norms seem to have protected young people from Sri Lanka, because they seem to favor non-penetrative vaginal activities, but there is evidence of risk behaviors that do not challenge mores like anal sex, use of sex work, sex among men, and partial vaginal penetration.

In any case, these three studies insist on the need that preventive interventions be broader than only education on HIV/AIDS, because risk behaviors of vulnerable populations are inscribed in wider contexts that determine them.

Evaluation of intervention and prevention programs

In the final rapporteur session, Mane said that a great number of presentations in the Social Sciences track of the Conference emphasized that preventive programs based on community work are effective in the struggle against the epidemic. Many of them addressed issues related to social inequality and its role in risk of HIV infection, especially regarding stigma of infected and sick people, gender and power which hinder negotiation of safe sex practice, poverty, and impossibility of having access to health services both in terms of prevention and of treatment, as well as other structural elements that construct vulnerability.

Even though these strategies have made the complexity of the problem evident, Mane added that it is necessary to analyze it through the design of interventions that address the problem in a practical manner and that are able to evaluate its effectiveness. However, such programs’ forms of evaluation do not report its results exclusively in terms of change of sexual behaviors, particularly the use of condoms, but they describe more deeply the conditions that allow or not for those changes to occur. In this sense, the rapporteur team regarded as innovative a series of presentations of evaluations carried out with local tools and resources, as well as research that includes action, especially in developing countries in which the optimization of resources is vital.

In this session it was stressed that such programs need to be strengthened and its existence secured in the long term, by providing their members with skills and education as well as fostering initiatives from the civil society.

In several sessions of the Conference, studies were presented that showed the effectiveness of the involvement of community-based organizations in prevention and care, both from the research and the intervention points of view.

An example of such approach was given by the study by Kegeles (et al, 1996)(41) which consisted of the evaluation of an eight-month preventive program, carried out in two cities in the United States, with young gay and bisexual men. The program included the following actions:

  1. A community center for young gay men, created specially by the program
  2. A core group of young gay men that directed the project
  3. Informal work among friends
  4. Formal work in meeting points for gay men and in events carried out by the project
  5. Small groups that discussed safe sex practices and informal work about other important issues for the community

There were two previous surveys and two afterwards, with a cohort of young men from both communities. The findings show that, before the intervention, 21% of the respondents reported anal intercourse without protection with casual partners and 54% with main partners. After two months of the intervention, there was a relative decrease of 32% of risk practices with casual partners and of 26% with main partners. This same decrease was found a year later with casual partners but not with main-partners, with whom risk sexual practices had increased. The conclusions show that the mobilization of young gay men in order to motivate each other to practice safe sex and the creation of a center for support of this population proved an effective approach to prevention of HIV infection; but it is necessary to support this kind of programs consistently, as well as to reinforce actions to increase safe sex practices within stable relationships.

Similar results were presented by Pradeep (et al, 1996)(42), who implemented an ethnographic evaluation of sexual behavior between men in Madras, India. This approach was not easy because local authorities asserted there was no homosexual interaction in that city.

However, the research team proved right, by making visible a group of men in high risk of becoming infected. Once the places where sex between men occurs were located, a strategy was developed to contact peers for a community of approximately 3000 men. This strategy tried to promote awareness of HIV/AIDS, promote skills for the use of condoms, collaborate in the individual assessment of risk and secure access to a non-stigmatizing care of STD's, as well as to counselling and support. This program was implemented on a daily basis, with the participation of members/peers of the community, residents of the area that served as contacts, and young men that worked in other sites of the area.

There were random surveys pre- and post-intervention (1994 and 1995) with 125 men in meeting places. It was found that oral sex as the only activity in their last sexual encounter increased from 17% to 57%, while the number of respondents reporting anal sex decreased from 78% to 38%. Among those who reported such practice, the use of condoms increased from 53% to 65%. These results showed that peer work was highly effective for behavior change and that the interests of these men in other STD's was the gateway to HIV preventive work.

Another example of such interventions are the AIDS Community Demonstration Projects (1996).(43) They consisted of a series of preventive community programs, implemented in five cities in the United States and targeted toward high-risk populations. A common research protocol was developed, adapted to the conditions of each city and based on change behavior models like the health belief model, the theory of reasoned action and the stages of change continuum (SOC), which tries to measure the disposition of individuals to carry out and sustain behavior change.

The programs intended to determine the efficacy of certain community interventions for hard-to-each populations in each site, and, in case they were effective, to apply them to other prevention programs.

Before implementing the intervention, ethnographic techniques were used (informal interviews, focus groups and interviews with key informants like service providers, teachers, etc.) in order to identify high-risk populations which, depending on the city, comprised intravenous drug users, sex workers and/or men who have sex with men. Surveys about risk sexual practices were carried out and certain members of the communities were recruited who, once trained, would serve as educators and would implement the intervention. Printed materials were designed and distributed, as well as condoms and bleach kits, with the idea of showing role models so that preventive practices could be valued positively.

The evaluation of the program (implemented between 1989 and 1996) showed that the exposure of high risk population to preventive programs increased considerably (from 1% to 18% at starting point, to 22% and 68% during the early phase of implementation). Sexual workers reported more exposure to the program, while men who have sex with men but do not identify themselves as homosexuals reported the least exposure.

Concerning consistent condom use, there was a significant increase in vaginal and/or anal intercourse with casual partners as well as a more frequent carrying of condoms among those people who were exposed to the program. There was a similar increase, but not significant, in the use of condoms with main partners. The conclusions of this study show that theory-based interventions articulated within high risk communities can significantly decrease risk of HIV infection.

Other kind of interventions showed the importance of taking into account the cultural and structural specificities of the target population.

For example, Mishra (et al, 1996)(44) presented the results of the evaluation of educational material specially designed for a population of migrant Latino farm workers in the United States with a low literacy level. Living conditions of the population were studied in advance and it was determined that, besides living below the minimum well-being standards, migrants had little or no access to health services in the area. Furthermore, it was detected that several sex workers operated in work sites and did not use condoms.

Through a quasi-experimental design, pre and post-intervention surveys were implemented in two groups of farm workers that came from Mexico and spoke only Spanish. The intervention lasted three weeks and consisted of the distribution of a "fotonovela" (photoromance) and a "radionovela" (radio soap opera) written with a social marketing approach (the "good" character, the "bad" one, a role model and the sex worker as educator), that provided information about risk of HIV infection, risk factors and prevention. The educational material was designed taking into account the low levels of literacy of the targeted population.

At post-intervention survey, the men from the experimental group reported an increase in the use of condoms with sex workers (from 7% before to 65% after the intervention), while none of the participants of the control group reported condom use neither before nor after the intervention.

These results could be questioned, however, in terms of compliance of respondents towards researchers by reporting the expected behavior. It would be necessary to re-evaluate the effects of the intervention at a later time, because it was not implemented during a long period of time, neither was it rooted in the natural networks of the workers’ relationships. In any case, the presentation shows that it is fundamental to design educational materials targeted to specific populations, according to their culture and as a result of a previous exploration.

Westover (et al, 1996)(45) presented a review of 75 evaluation studies that showed:

  1. Large scale studies that use only quantitative methods, frequently incapable of detecting the true effects of community-based prevention programs.
  2. Even though scientific rigor is considered in all of them, rigid experimental designs often show disappointing results.
  3. Effective evaluation of this kind of programs requires:

a) to develop a social- and/or behavioral-science theoretical base for evaluation, during the design phase

b) to document the implementation of the program

c) to use research methods and designs that will allow evaluators to investigate the mechanisms of behavior change

d) to use well designed and theoretically-based result indicators that will be sensitive to capture both the effects of intervention at the community and the individual levels.

In summary, an assessment of the impact of a community-based prevention intervention should resort both to quantitative and qualitative methods. For instance, exposure to intervention and participation can be measured with quantitative techniques, while qualitative approaches offer the possibility of documenting the reliability of interventions, triangulating findings and adding contextual information, making it possible to generalize the results to a greater extent.

To conclude this section, we will recall the plenary presentation by Adjorlolo (1996)(46), who stated that, for the first time, there can be a glimpse of hope that the AIDS epidemic could be controlled. Encouraging examples of reduction rates of infection in Uganda, Thailand and other countries suggest that a clear commitment to preventive efforts can have a positive effect. For example, the implementation of an STD treatment program in Tanzania decreased 40% of incidence of HIV transmission, while in Abidjian, Ivory Coast, STD treatment and condom use promotion among female sex workers increased preventive practices in 90% among the population. In the United States and Nepal needle exchange programs combined with other interventions have reduced HIV incidence among intravenous drug users. However, the speaker stressed the importance of translating research into action and of studies becoming community-based intervention programs, as well as of promoting peer-education programs for hard-to-reach populations.

Relevant conclusions for decision-makers in Latin America and the Caribbean

It can be said that, regarding the Social Science area of the Conference, and whatever research methods used, whether quantitative or qualitative, most studies and interventions met the following considerations:

1. Local governments' political will is essential to produce prevention and care strategies regarding the HIV/AIDS epidemic, through the commitment of economic resources and national and international collaboration.

2. This political will has to be translated into concrete actions of control of the spread of the virus which should include, along with appropriate health policies, support and coordination with local and community organizations which offer access and work with groups vulnerable to HIV infection.

3. Governments must start by working at the prevention level with those groups in which HIV prevalence is higher, without disregarding those that constitute the future epidemic.

4. Information, education and communication programs targeted for the general population have a very limited efficacy, as research has shown, because HIV knowledge is not sufficient for behavior change, owing to structural¾ social, economic and cultural¾ determinants that shape the social vulnerability of certain groups to the epidemic.

5. Thus, preventive and care programs must consider and address such determinants in order to influence the conditions that allow or impede protection behavior against infection.

6. Empowerment and community mobilization have been the most successful strategies against HIV spread. Therefore, the approach of preventive programs must shift in order to locate emphasis on contact with specific groups and communities, rather than on individuals and their behavior.

7. It is essential to secure the sustenance of such programs, being the most effective in the long term. Programs targeted to hard-to-reach and/or non-captive population in health and educational services must be based on the recruitment and support of peer education.

8. Since AIDS does not seem a priority for the populations of Latin America and the Caribbean¾ especially for some disenfranchised groups¾ , because of their precarious life conditions, preventive work should be included in a broader perspective that will address other specific concerns of the communities. For instance, the consequences of gender relations for the negotiation of safe-sex practices, the treatment of STD's for women, or cultural meanings of virginity and sexual initiation, as well as pregnancy prevention, among young people.

9. Educational materials must be elaborated for specific groups in collaboration with targeted community members, in order to assure their relevance. Also, their impact must be evaluated without over-valuing the effect that information may have in the adoption of preventive measures.

10. Preventive strategies must consider the difficulties populations face when trying to use condoms, and offer a menu of alternative behaviors like abstinence, monogamy and reduction of number of partners, taking into account the characteristics of each group.

Conclusions and recommendations toward the design and implementation of actions of prevention and control of HIV/AIDS and other STD's, as well as care of the affected populations

National governments have the obligation to implement preventive actions against HIV transmission and to care for the infected and affected by AIDS, because it is a public health problem. Not to do so because of the political costs it may bring constitutes, at this moment, a serious lack of responsibility that endangers large sectors of the population, affecting the life of whole countries from the economic and social point of view. To deny the epidemic does not make it disappear, but it helps to spread it.

In this sense, the first responsibility of governments is to secure, at the national level, a safe blood supply, HIV screened. Also, it is the obligation of the governments to dedicate to AIDS patients the same kind of care given to other chronic conditions. One of the main priorities is, therefore, to make insurance companies include AIDS in their policies as they have done with cancer. The regulatory responsibility of governments in these matters is unquestioned.

But its intervention to stop sexual transmission is equally essential. However, this is a complex issue because of the possible interpretations of governments as intruders in the private life of their citizens. It is not the role of the government to indicate what kind of sexual partners or practices people should have, that is, the government should not be the implementing agent of interventions. It is its competence, nevertheless, to foster and secure that specific social groups get involved in prevention and intervention strategies.

In this sense, one of the most important recommendations that emerged from the Conference¾ supported by the vast amount of information produced globally¾ suggests that governments carry out a regulating and fostering role of preventive interventions, through supporting diverse social organizations that are capable of working on the subject. This de-centralizing movement agrees with the process of democratization that the whole region is going through at the present time, and which implies active participation of civil society in the life of each country.

As it has been demonstrated by the information presented here, the struggle against social vulnerability to HIV infection is the struggle against the epidemic itself and requires a long-term effort that is the responsibility of present governments, regardless of when their administration will be over before evaluating the effect of such policies.

In order to reach this goal, it is suggested to re-direct existent resources in the different countries through the following actions:

  1. To identify the epidemiological pattern of each country in order to determine high-risk populations.
  2. To identify civil and social groups and organizations that work currently with such populations.
  3. To promote and strengthen such organizations in order for them to implement community-based prevention and care interventions, respecting the characteristics and nuances that programs would need for each of them.

Meeting their role of regulation of health and education policies, governments could implement the following actions immediately:

  1. Creation of a technical group in which authorities, scholars and members of civil organizations participate, and which would call for prevention projects against HIV, that would be financially supported, after their assessment.
  2. The role of this technical group would be to approve such proposals within an open contest, based on their quality.
  3. To evaluate the proposals of groups in terms of the possibility of organizations to account for cost-effectiveness of their designs, their population coverage, and the well-known quality of the work they carry out, as well as the theoretical base of research and intervention proposals.
  4. To implement coordination mechanisms with organizations as institutional development, tax exemption, agreements with social groups, and contracting and subcontracting by work.

Considering the information presented in this review, the strategy of involvement and coordination with civil and community organizations, combined with an overall public health and education policy, seems to be the most efficient to decrease virus transmission in a permanent and consistent manner. Social marketing has shown relative effectiveness in behavior change, but ephemeral. The costs of sustaining this kind of campaigns in a permanent manner are too high and distract resources for other preventive interventions. Therefore, we suggest that governments commission a series of studies whose goals should be the following:

  1. To carry out diagnosis of new infections
  2. To determine the future of the epidemic and the subepidemics
  3. To determine those groups in urgent need of interventions
  4. To know in detail, through quantitative and qualitative research designs, the behavior of the epidemic, ant the structural determinants¾ -social, economic and cultural¾ of the vulnerability of such groups to HIV infection
  5. To investigate the effectiveness of intervention models designed with the information produced by the studies described above. Such designs must:

- be grounded on developed theories
- include in its design a detailed evaluation of their effects
- allow for adaptations to diverse sexual communities and cultures in higher risk of infection

The recommendations here offered intend to collaborate with those who are responsible for the struggle against AIDS in Latin American and Caribbean countries, through reorganizing the resources already existing, and mobilizing society in order for it to get involved in the control of the epidemics. The Vancouver Conference showed that this goal can only be achieved through a joint effort of diverse sectors of society, in a collaboration that will be respectful of differences and that will address the problem without regulating the sexual practices of citizens.

____________________

   I.. Apart from these kinds of studies, the following types of research have been conducted in developed countries:

- evaluations of preventive interventions
- vaccine trials, barrier methods, treatment of sexually transmitted diseases (STD)
- research on individual behavior, based on traditional models of health education
- community-based studies: control-community studies (few)
- mathematical models of incidence, mortality, costs, and intervention impact.

    II. Free translation from Spanish.

    III. Free translation from Spanish.

    IV. Social Sciences rapporteur session, XI International Conference on AIDS, Vancouver, July 11, 1996.

Suggested References

Schlitz MA y Adam P. The influence of personal and intergenerational factors on the incidence of HIV and STD's among young gay and bisexual men in France. XI International Conference on AIDS; Abtract Mo.D.490; July, 8, 1996; Vancouver.

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