AIDS Prevention for Refugees: The Case of Rwandans in Tanzania

Outside a clinic tent in the Benaco refugee camp in Tanzania sits an emaciated woman, holding a small child. So weak that she can barely rise when the counselor calls her name, she looks far older than her 25 years. Neither cholera nor malaria -- afflictions that plague many in the camp -- is the reason for her suffering: she is one of many refugees from Rwanda with AIDS.

The epidemic has hit Rwandans hard. For some sectors of the population, infection rates have been among the highest in Africa. In 1992, for example, testing of pregnant women attending antenatal clinics in the Rwandan capital, Kigali, revealed that more than 30 percent were seropositive. When genocidal civil war broke out in the spring of 1994, hundreds of thousands of Rwandans fled, and HIV inevitably followed them into hastily constructed refugee camps in neighboring Tanzania and Zaire.

Only four months after the exodus began, the AIDS Control and Prevention (AIDSCAP) Project contracted with CARE International to manage a broad-based HIV prevention pilot project for Rwandan refugees at Benaco, one of the first ever to attempt early large-scale interventions within a refugee camp. Because so little research on AIDS prevention has been done within refugee settings, the pioneering work at Benaco and three other Ngara District camps offers valuable lessons on working with displaced populations under crisis conditions.

Season of Slaughter

In April 1994, the longstanding political and ethnic conflict between Hutus and Tutsis reached the breaking point when a plane carrying the presidents of Rwanda and Burundi was shot down. A few hours later, the widespread slaughter of Tutsis by the Hutu majority began, and the world watched news broadcasts of the atrocities in disbelief. When Tutsi forces gained control of the country several weeks later, nearly half a million Hutus fled across the border into Tanzania, and even more sought refuge in Zaire.

Within a matter of days, the refugee population in the Benaco camp, only 18 kilometers from the Rwandan border, swelled to more than a quarter million, making it the second largest city in Tanzania. The United Nations, CARE and other NGOs responded swiftly to provide emergency relief to the refugees, setting up a food distribution network, warehouses, sanitation and health facilities, and other services. A second camp, Musahara Hills, opened nearby to relieve some of Benaco's overcrowding.

But other concerns soon surfaced. The conditions of refugee life greatly increase the risk of exposure to HIV and other sexually transmitted diseases (STDs). The destruction of families, deterioration of social structures and unraveling of social mores, loss of homes and income, overburdened health care resources, and crowding and commercial sex trade within refugee camps are just some of the factors that lead to increased risk-taking behavior and susceptibility. Women and adolescent refugees, vulnerable to violence, rape and coercive sex, are at especially high risk.

Before the war, CARE and AIDSCAP had begun a community-based AIDS prevention project in northern Rwanda, but activities halted when the conflict accelerated. Given the high rate of HIV in Rwanda, there was fear that the number of HIV infections might rise precipitously among the refugees. USAID and AIDSCAP responded by shifting funds from the Rwanda program to the camps, and the AIDS/STD Prevention Project for Rwandan Refugees began in August.

Designing Appropriate Strategies

The project uses community outreach education and condom distribution to encourage refugees to change behaviors that put them at risk of sexually transmitted HIV and other STDs. The target population is all sexually active persons, with special efforts directed toward women without partners, young men and adolescents. As the lead implementing agency, CARE is responsible for the overall management of the program, with Population Services International (PSI) handling condom distribution and promotion, and John Snow Inc. (JSI) providing assessment and evaluation support.

Findings from a baseline knowledge, attitudes, beliefs and practices (KABP) survey conducted by JSI, with the assistance of CARE and PSI, revealed the gravity of the problem. Reported condom use was low -- 16 percent for men during the most recent sexual encounter -- despite the fact that 87 percent of respondents knew at least two ways to prevent HIV infection, one of which was condom use. This high level of awareness is due largely to the prevention messages these refugees received from aggressive anti-AIDS campaigns at home in Rwanda. More than half of the respondents perceived themselves to be at moderate or high risk for HIV infection.

Given the possible resistance to condoms revealed by the KABP and in early interactions with the refugees, project managers felt that an exclusive focus on condom use was not wise. Other behavior change strategies, such as promotion of fewer sexual partners and loyalty to one partner, and aggressive treatment and follow-up of STDs also became centrally important. The project collaborates closely with the African Medical Research and Education Foundation (AMREF) to promote STD treatment through syndromic management. AMREF trains medical assistants, supplies drugs and sponsors a mass education campaign in the camps and the adjacent Tanzanian village, Kasulu. CARE has trained 14 counselors to give health education sessions on AIDS and STDs to patients awaiting treatment at outpatient clinics.

The intervention also depends upon a network of approximately 100 AIDS community educators (ACEs) recruited from the refugee population. ACEs deliver AIDS/STD prevention messages in one-on-one encounters and group sessions to members of their own communities and make referrals for STD treatment in the privacy of refugees' dwellings. Condoms are dispensed free of charge by ACEs and by special condom promotion teams and peer educators; within the first 12 months of the project, more than 1.5 million were distributed.

A home-based care component was added after the first year as more and more HIV-infected camp dwellers developed AIDS. Volunteers trained in home care regularly visit homebound refugees, bringing water, firewood and food. To avoid further stigmatization of people with AIDS -- a serious problem among Rwandan refugees -- the project does not single out AIDS patients; any ill or disabled person without family support can receive home-based care services.

A high level of collaboration between agencies is needed to carry out the home-based care program. NGOs work together to coordinate the distribution of clothes, blankets, cooking utensils and other items, and have helped a group of refugee women start a kitchen to prepare food for those unable to cook for themselves.

Women and Girls at Risk

I know a rapist who lives very close to us. A boy of 20 years took a lot of alcohol and got drunk. Then he attacked a six-year-old girl. He saw her going to the latrine and followed her in -- we knew it because we heard her shouting. They took the boy to the security agents, but he ran away. They took the child to the clinic quickly, and it became necessary to refer her to the hospital. She stayed there quite a few days. (excerpted from remarks by a participant in an unmarried mothers' focus group discussion)

The harshness of refugee life for women goes far beyond the double work day and backbreaking toil so familiar to African women. Many Rwandan women on both sides of the conflict were beaten, raped and tortured. Tragically, the violence did not end when the women finally arrived at what should have been their refuge -- the refugee camp.

One of the biggest threats to the physical safety of women and girl refugees is the lack of employment for men, which leads to boredom, depression and an increase in alcohol consumption -- which in turn lead to increased domestic violence and rape. Unfortunately, few rapes are ever reported to the authorities, partly for fear of retribution, partly because Tanzanian law makes prosecution for rape nearly impossible.

Women without male protectors (husbands, fathers, uncles) are particularly vulnerable in the camps. Many women who were raped during the conflict have given birth to babies. These so-called "unmarried mothers" are easy targets, with no one to stand up for them. They report that men walk into their huts at will, rape them and leave. Because they occupy such a low rung on the social ladder, they receive little sympathy from the community. The project helped start support groups for these women, who have found strength by uniting with others suffering the same fate. They also benefit from special income-generation efforts, such as produce-growing cooperatives, recently started by other NGOs within the camps.

When the camps were new, large communal latrines were built some distance from the dwellings. These structures, sheltered by large sheets of plastic, became the site of many sexual assaults on women and girls. The situation improved after small four-family latrines were built nearer homes, replacing most of the communal ones. Women and children seeking firewood outside camp boundaries have also been victims of assault. Most relief agencies in the camps now agree on the need to involve women in the early stages of camp layout and fuel collection to improve security.

In the Ngara District camps, project staff, NGO health service providers, community and psychosocial service agencies, and other interested parties participate in regular discussions to seek solutions to violence against women. One outcome of these discussions was the formation of a crisis intervention team made up of refugee social workers, counselors and other volunteers who provide counseling, medical and legal assistance, and social support for victims of sexual assault.

Even women who are not victims of violence and sexual assault are often powerless to insist on safer sex practices. Because condom use is often associated with promiscuity, women are afraid to suggest condoms to their partners. Economic survival for some refugee women may mean exchanging sex for money or goods -- sometimes even for water. Such coping strategies put women at higher risk for HIV and other STDs than do the coping strategies of male refugees.

Reaching Young People

Cultural barriers pose a special challenge to creating prevention programming for younger refugees. In Rwanda, not even parents discuss sexual matters with adolescents, and community educators and health care providers in the camps feel greatly constrained by such taboos. ACEs have been reluctant to include adolescents in AIDS and STD education sessions, even though they know that adolescents are their most important target group.

Conditions in the camps deepen the problem. There are no secondary schools, so most adolescents are idle, and parents have little control over their activities. Rural teenagers quickly adapt to the street-wise behavior demanded by camp life. Many adolescents, orphaned or separated from their families, live on their own.

Project staff soon learned that sports events are perhaps the most effective medium for reaching young people -- especially young men -- with HIV/AIDS prevention messages. PSI helped construct a community sports complex with a soccer field and volleyball, handball and basketball courts. Weekly sports events -- for most refugees, the only available form of recreation -- draw thousands. Special events, such as foot races, are also very popular. During intermissions, traditional dancers incorporate HIV/AIDS prevention messages into their performances. PSI and CARE staff distribute condoms and use megaphones to broadcast prevention messages and songs.

Adolescent girls, who are at the greatest risk of acquiring HIV and other STDs, are the most difficult to reach. Unlike boys, who can earn a few shillings running a bicycle taxi service, gambling or selling firewood or water, girls have little opportunity to earn spending money in the camps and may be coerced into exchanging sex for money, gifts or protection. Young girls are sought by older men as sex partners because they are presumed to be free of HIV. During focus group discussions, young girls admitted having difficulty saying no to sex even with boys their own age. The project is developing income-generating activities for adolescent girls to provide them with productive activity and enable them to earn money without endangering themselves.

Encouraging refugee youth to seek health care -- even for painful cases of STD -- is another challenge. To demystify health clinics and improve access to services, the project organized a series of "Adolescent Health Days," which featured tours of clinic facilities, basic health screening and prize drawings. The first event drew more than 700 people outside one clinic. Focus groups revealed the critical need for basic reproductive health and anatomy education. Sign-up sheets for family health education classes filled up quickly.

Culture and Behavior Change

HIV/AIDS prevention staff in refugee settings must understand the cultural and social context in which they are working. Complex power relationships shape social interactions, permeating every facet of camp life and affecting the outcome of project efforts.

By meeting with both political and religious leaders of the various communities within the camps, project staff were able to learn about broadly shared attitudes and anxieties about HIV/AIDS and how best to design culturally acceptable prevention initiatives. Formally introducing new ACEs to these leaders has proven to be an effective way of gaining acceptance by a refugee community with a high level of fear and distrust.

Project staff have tried many different approaches to encouraging individual action, which helps refugees, too often passive recipients of assistance, regain a sense of control and self-sufficiency. One of the more effective strategies popularizes condom use through self-empowerment, using the theme "The power to choose." Another message -- "Treat STDs to protect and ensure future fertility" -- has prompted many refugees to seek treatment because of its appeal to the importance of childbearing in Rwandan culture. Involving community members in HIV/AIDS prevention activities also helps give them a sense of control and ownership. One of the most popular activities for both community volunteers and audiences are HIV/AIDS prevention skits that refugees write and videotape themselves.

Few of the refugees in the Ngara District camps have returned to Rwanda, so the project's prevention efforts have continued into a second year. Eighty-four percent of respondents to a second KABP conducted after the project's first year reported they had received AIDS/STD prevention messages in some form, and about 80,000 people were motivated to seek counseling.

Unfortunately, condom use had not increased in that year. There may be several different reasons for this, including rumors that condoms contain HIV, the strong drive to replace children lost in the war, and religious leaders' equation of condoms with promiscuity. Other findings are more encouraging -- an overall decrease in the number of multiple sexual partners, improvement in knowledge about HIV transmission modes, less social isolation for women -- and suggest that the project is having a positive impact.

A Population with Special Needs

Working with refugees stretches the boundaries of traditional prevention programming. The project's ongoing experiences in the Ngara District offer numerous insights for future work with refugees, many of which can be summed up in three general lessons learned.

First, planning HIV prevention programming for refugees requires flexibility, creativity, cultural sensitivity -- and a great deal of patience. Behavior change comes slowly in any environment, but in a refugee camp where people struggle with survival issues far more real to them than the mysterious AIDS virus, changing sexual behavior can seem to be a monumental task. Yet the project has shown that it is possible to successfully engage refugees at many levels to promote health-seeking behavior, largely through empowerment and enabling strategies.

Second, HIV prevention programming for refugees cannot be successful if it does not address the greatly magnified vulnerability of women and young people struggling through social crisis. Women -- particularly those without men -- need assistance in developing both self-esteem and income-generating activities so they can resist coercive sexual advances that offer short-term financial benefits but have destructive long-term health effects. Young refugees need guidance, especially when family members have disappeared, and meaningful activity to occupy their minds and provide spending money. While income-generation projects normally do not take center stage in HIV prevention programming, they can help vulnerable sectors of the refugee population avoid risky coping strategies and protect themselves from infection.

Finally, coordinating the work of relief agencies and prevention programs is particularly important in a refugee setting. In the Ngara District, several organizations that share the same objectives were able to divide the tasks involved in both HIV/AIDS prevention and home care and to avoid duplicating efforts. Daily collaboration supplemented with weekly meetings has made such coordination possible.

As the project matures, a greater understanding of how to help refugees prevent HIV infection is also evolving. With continuing unrest throughout the world and the growing international threat of the HIV/AIDS epidemic, sharing these insights will become more and more important.

-- Judy A. Benjamin

Judy A. Benjamin is a medical anthropologist and international health consultant who served as CARE's refugee project director in the Ngara District of Tanzania from August 1994 to February 1996.