AIDSCAP Explores Link Between HIV/AIDS Care and Prevention

Experience in communities worldwide suggests that providing HIV/AIDS care and support can help prevent further transmission of the virus. Now an AIDSCAP study will examine how care enhances prevention.

Passersby barely notice the large shipping container that stands at the edge of the hospital grounds in a small Tanzanian market town. But others -- mostly young men and women -- stop and go inside.

Some enter hesitantly, dreading the news that may await them. Others hurry inside, seeking reassurance. For the container serves as the Muheza office of the Tanga AIDS Working Group, a community-based association of health workers that provides HIV pre- and post-test counseling, HIV/AIDS prevention services and continued counseling and support for people living with HIV/AIDS.

These services, offered as part of a project funded by the U.S. Agency for International Development (USAID) in Tanzania's Tanga district, represent one of the new models of care that communities like Muheza have developed in response to a burgeoning AIDS caseload. Outpatient medical care and counseling are available, with referral to the hospital when necessary and home care for those who are too ill to come to the office.

The makeshift office is also one of the sites for a unique research study, one of the first to assess how providing such care for people living with HIV/AIDS affects their sexual behavior. "People have talked about the linkages between care and prevention, but nobody has really examined those linkages," said Dr. Joan MacNeil, who designed the study.

Out of this research and service delivery experience at Tanga will come a greater understanding of two of the most important questions facing policymakers and program managers in the second decade of the epidemic: how to help people who are infected reduce the spread of the virus to others and how to provide more affordable and effective care and support to people living with HIV/AIDS.

Care in Communities

Since the beginning of the epidemic, international HIV/AIDS programs have addressed care and prevention separately. Faced with limited resources and no effective, affordable treatment against the virus, most donors and many nongovernmental organizations (NGOs) in developing countries opted to support HIV prevention efforts, leaving AIDS care and support to government- and church-funded health services.

But the demands the epidemic makes on these services has stretched them almost to the breaking point. In a number of African countries, for example, half of all hospital patients are infected with HIV. "Most hospitals are overburdened in high-prevalence countries," said Dr. MacNeil, who is associate director for behavioral research at the AIDS Control and Prevention (AIDSCAP) Project. "They just can't cope."

Government spending on AIDS care in some of these countries equals 50 percent or more of the annual health care budget, and costs will continue to soar as more and more people develop AIDS symptoms and related illnesses.

Concerns about spiralling costs are one of the driving forces behind the move to community-based care. Another is concern for those who are infected: caregivers recognized early on that people living with HIV/AIDS do not always need to be hospitalized when they fall ill and that many episodes of illness can be managed at home. Grassroots organizations responded by developing services in communities, including basic medical care, counseling, and training and support for family members and other caregivers.

Questions remain about the most cost-effective ways to provide these services in different settings. The promising models that have emerged -- often from the communities themselves -- include outpatient clinics, residential community centers, hospices and home-based care.

Although its mandate is to strengthen capacity in HIV/AIDS prevention, the AIDSCAP Project had an opportunity to help several organizations provide such community-based care and support services through a small grant program. And in the USAID-funded Tanzania AIDS Program (TAP) managed by AIDSCAP, prevention and care have been integrated from the beginning.

Overcoming Fear

In Haiti, where an estimated 12,000 people had developed AIDS by 1995, AIDSCAP grants enabled two hospitals to extend HIV/AIDS care into the communities they serve. Hospital staff provided medical care, counseling and prevention education at outpatient clinics and in patients' homes. Counselors helped individuals and families cope with the emotional and practical challenges of living with HIV/AIDS. The projects even offered small loans to help unemployed HIV-positive people earn income and allow children orphaned by AIDS to stay in school.

The AIDSCAP grants were greeted enthusiastically in Haiti. Dr. Eddy Génécé, who served as resident advisor of the AIDSCAP program until it ended in 1996, said that many organizations had been requesting the program's support for care projects. Within a month after he announced that the grants were available, Dr. Génécé received eight proposals.

One of the three Haitian recipients, a community-based hospital affiliated with the Baptist Church called Hôpital de Fermathe, serves a population of about 100,000 people in the mountains south of Port-au-Prince. In 1994, Fermathe's staff found that 49 of the last 100 HIV tests performed at the hospital had been positive.

In the isolated rural communities served by the hospital, HIV/AIDS was considered the result of a supernatural curse, and people who contracted the disease were shunned. Hospital staff recognized they needed to go out into the communities to help people living with HIV/AIDS and to teach their neighbors how to care for them.

With AIDSCAP support, Fermathe staff offered HIV care and counseling at the hospital's four satellite clinics and through a mobile health clinic. They also worked through the churches, asking each community to identify a caregiver to receive training. These caregivers -- usually ministers or other religious leaders -- learned how to support people living with HIV/AIDS, advise families on caring for them, and refer people to other support services.

Convincing religious leaders to play such an active role in the program was one of the hospital's most remarkable achievements, according to Dr. Génécé. He explained that before the hospital began discussing HIV/AIDS with community leaders, many clergy members stood in harsh judgment of those who had contracted HIV/AIDS.

"In several areas the religious leaders refused to do funeral services for someone who had died of AIDS," said Dr. Génécé, who now directs a Haitian NGO devoted to HIV/AIDS prevention and care, Promoteurs l'Objectif ZeroSIDA (POZ).

Eighty outreach educators from the hospital's community health program reinforced the caregivers' messages of prevention and compassion. They also distributed condoms and a Creole-language brochure about preventing HIV/AIDS and other STDs.

Marie-Thérèse Racine, a nurse and counselor at Hôpital de Fermathe, believes that community members are beginning to change their sexual behavior. She knows that as a result of the hospital's program, many people have changed their attitudes toward people living with HIV/AIDS. "Gradually, with sensitization, they began to understand, to ask questions," she said.

These education efforts helped community members understand that HIV/AIDS is not the result of a supernatural curse. Acceptance of HIV/AIDS as an illness led to less stigmatization of people with HIV/AIDS and greater willingness to speak openly about preventing transmission of the virus.

People's ability to talk about HIV/AIDS in public -- even in the most unlikely places -- is a sign of how much the program accomplished in a short time, Dr. Génécé noted. As evidence he cites a meeting he attended in a church, where community members discussed their experiences with the 16-month project.

"They said that at the very beginning they couldn't even say the word condom in the church because the pastor didn't allow it," he said. "And now that has changed."

Hand in Hand

Unlike most donor-supported efforts at the time, the Tanzania AIDS Project (TAP) included care and support when it began in 1994. AIDSCAP Resident Advisor Penina Ochola noted that this decision had as much to do with the structure and philosophy of the program as it did with the desperate need for such assistance in a country where more than 120,000 people had already developed AIDS.

"We built on what was already there in the community," Ochola said.

What they found were health providers and NGO personnel grappling with the twin problems of care and prevention. TAP was designed to help NGOs and other grassroots organizations coordinate these efforts and strengthen their ability to manage HIV/AIDS programs.

In the nine areas of the country most affected by the epidemic, TAP established "clusters" of NGOs that work together on community-based prevention and care projects directed by a "lead" NGO.

Most clusters have an information center where they offer HIV/AIDS counseling, support and referrals to nearby services for medical care. In the town of Tanga, for example, the information center is in the same building as the office of the district AIDS coordinator, right beside the district hospital.

Medical treatment, care and prevention are closely integrated because the Tanga cluster is managed by the members of the local health professionals' association, the Tanga AIDS Working Group. The group's peer education and other outreach efforts are complemented by the counseling, which gives staff members opportunities to discuss prevention with those who are already HIV-positive.

"In caring for and involving those affected, you're also addressing the issue of helping them avoid infecting others," Ochola said.

Most people served by the cluster go to the Tanga information center for information, counseling and support. But as in Muheza, where the Tanga AIDS Working Group has a satellite office, home care is available for those who are too ill to make the trip.

The public health nurses who provide home care do all they can to meet the physical, emotional and psychological needs of patients and families struggling with serious -- sometimes terminal -- illness. On any given day they might administer intravenous fluids, advise family members about basic nutrition and safety precautions, and provide grief counseling.

About 50 patients receive home care. Since the working group has only one vehicle, the nurses usually walk or ride bicycles -- often for miles -- to the patients' homes. They make these trips on weekends or in the afternoons or evenings after putting in a full day at the hospital or information center.

"They are very, very dedicated," Dr. MacNeil said. "One of the nurses was talking about a patient she was visiting daily."

This kind of caring -- in both senses of the word -- seems to make people more responsive to prevention messages, according to Ochola. "Care and prevention have to walk hand in hand," she said.

The Tanga Study

As millions of HIV-positive people develop AIDS, the line between prevention and care is disappearing in communities throughout the world.

"We know that it's almost impossible to separate the two at the practical level, especially in higher-prevalence countries," Dr. MacNeil said.

In fact, she added, separating care and prevention may even undermine prevention efforts. "If people living with HIV/AIDS feel abandoned by care services, they are less likely to acknowledge their status or to be motivated to protect others."

Experiences like those of the Hôpital de Fermathe and the Tanga AIDS Working Group suggest that HIV/AIDS care and prevention are complementary, but little is known about how care actually influences prevention. A few studies, mainly from developed countries, suggest that care and support in the form of counseling can play an important role in reducing risk behavior among people living with HIV/AIDS.

AIDSCAP's study in the Tanga district is designed to detect differences in risk reduction among HIV-positive people who receive enhanced support and those who receive post-test counseling only. Members of the experimental group will participate in regular counseling sessions and may request a home visit.

These home visits are for support rather than medical care, Dr. MacNeil explained. "During a visit, a counselor will talk to family members about what it means to be HIV-positive and how they can work together."

All participants will receive condoms, and no one will be refused counseling or other support services. "If people in the control group drop in to any of the centers, of course they will get services," Dr. MacNeil said, "but it's not a systematic effort to talk on an ongoing basis about their problems."

Principal investigator Dr. Gad Kilonzo started recruiting participants at three sites in the Tanga district in November 1996. People are asked to enroll voluntarily in the study after the second of two post-test counseling sessions. Approximately 200 people will be enrolled.

Members of both groups are interviewed at enrollment, after three months and at the end of the six-month study period. Researchers collect information about illnesses, hospital and clinic visits, episodes of sexually transmitted disease and, for women, pregnancy. They ask about risk behavior, condom use and other prevention strategies, discussing HIV with partners, and relationship histories. Participants also discuss their thoughts about their condition, the reactions of their families and communities, and the impact of their HIV status on decisions about having more children.

All of this information is expected to shed light on how people make decisions during the first months after they learn that they are HIV-positive and on the kinds of support that encourage them to adopt preventive behaviors. The findings, which will be available by the end of 1997, will be shared with policymakers, donors, program managers and health care providers.

"The results can be used to develop strategies for supporting behavior change over time among people living with HIV/AIDS," Dr. MacNeil said. "This is one small study, but it will give us a better understanding of one of the most critical issues in this second decade of the pandemic."

-- Kathleen Henry