The first randomized study of HIV counseling and testing may reveal whether they are effective as a catalyst for behavior change in developing countries.
When 22-year-old Anne Kanjiri, a resident of Nairobi, found out recently that she had tested negative for HIV, the news was more than just an opportunity to celebrate. It was a chance to make some changes in her life.
"I used to have many sexual partners before I was counseled and tested for HIV," she said. "When I got my results, I decided to get married instead."
To researchers from the Kenya Association of Professional Counselors (KAPC), Anne's response is as significant as the results of her test. Anne is a participant in the first study of the impact of counseling and testing (C&T) on behavior change for HIV/AIDS prevention among persons voluntarily seeking such service in developing countries.
Through randomized controlled trials conducted by the KAPC in Nairobi and by other centers in Tanzania, Trinidad and Indonesia, the co-sponsors of the study hope to discover whether HIV testing accompanied by personalized, one-on-one counseling can influence individuals to adopt preventive behaviors and lower their risk of HIV infection.
Although C&T has long been an essential component of HIV/AIDS programs in developed countries, the study is the first large-scale randomized research on its effectiveness as a tool for behavior change in developing countries. A limited number of studies of C&T's impact on specific populations?discordant couples in Gambia, pregnant women in Rwanda, employees at a textile factory in Zaire, and so on?have yielded mixed results.
The lack of C&T data that can be generalized to a wider population is one reason why there's been so much debate over its value as a prevention strategy. Given how costly both HIV testing and intensive counseling are, is C&T too expensive to be sustainable, especially in poorer countries? Can it work where there is little early medical intervention available for those who test positive? Is there a sufficient supply of condoms within poorer countries to support C&T?
"One of the big issues these days is the best use of scarce resources for prevention and care," said Dr. Kevin O'Reilly, of the joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO). "C&T can be more expensive and intensive than other prevention interventions, and it's crucial to have good information on its effectiveness so program managers can best decide how to use prevention funds."
The AIDS Control and Prevention (AIDSCAP) Project is funding the study at centers in Kenya and Tanzania, which began recruiting volunteers in June 1995. Funding for the centers in Indonesia and Trinidad, which opened in February 1996, came from WHO and UNAIDS. The Center for AIDS Prevention Studies at the University of California at San Francisco is coordinating the four centers, each of which will conduct the study for approximately 18 months.
Testing a Theory
C&T as a prevention intervention is believed to influence behavior in several ways. Knowing one's HIV serostatus could ease the anxiety of uncertainty and encourage better prevention and health maintenance behaviors. Early detection of HIV may also lead to referral to clinics for drug therapy, where it's available. Counseling could motivate risk reduction and present individuals with a range of choices for protecting themselves and their partners. Linking counseling and testing is thought to enhance the benefits of each.
To test these hypotheses, researchers first conducted formative research at the two African sites to develop culturally appropriate and methodologically sensitive surveys to gather information on sexual behavior, psychological status, knowledge and attitudes about HIV/AIDS and other sexually transmited diseases (STDs), and care-seeking behaviors for STDs.
After pilot testing in April and May 1995 that led to some fine-tuning, recruitment of participants for the two sites began, primarily through radio and newspaper advertising, posters displayed at workplaces and in public spaces, and one-on-one contacts. Over the course of several months, the response was impressive: 1,433 volunteers in Tanzania and 1,518 in Kenya. Initial interviews revealed an unexpected reason for the high turnout.
"I was pleasantly surprised to find that up to 86 percent of the people who came to the center in Kenya actually wanted to know whether they're HIV-infected," said Dr. Don Balmer, principal investigator at the Kenya study center. This challenges the popularly held belief that most people who suspect they have been exposed to HIV would rather not know their serostatus, he said.
At all four sites, the basic study protocol is the same, with minor adaptations to local conditions and culture. Participants are screened for information about sexual behavior, history of STD infection, and basic demographics, and are then divided randomly into two groups. Participants in the first group?known as the C&T group?receive pretest counseling and then are tested for HIV. After test results are available, each C&T participant receives personalized, interactive counseling, where individual life situations are discussed as the context for prevention recommendations.
The second group?called the HIC group, for health information and condoms?is the control group. This group is not tested, and, instead of counseling, views a video offering culturally appropriate information on AIDS and STDs and receives free condoms plus training in how to use them.
Six months after the initial visit, participants from both groups come back for follow-up. At this point, participants in both groups are tested for STDs and offered the option of an HIV test with counseling, and participants with an STD receive free treatment. Researchers also administer a follow-up questionnaire that tracks the behavior change activities of both groups since the study began. A second and final follow-up takes place 12 months after recruitment.
Both C&T and HIC are potentially valuable tools for prevention, but the focus of each form of intervention is very different. HIC is designed to offer sound and understandable prevention information that is generalizable, but C&T goes much further by concentrating on individualized prevention and care strategies, as well as emotional and familial difficulties that may be caused by learning one's serostatus or by introducing prevention methods into a relationship.
For an uninfected client, these strategies can include condom use and discussing fidelity and other sensitive concerns with loved ones. For HIV-positive clients, there are other issues: how to avoid infecting others, how to make sure support and funds are available when illness finally strikes, how to protect against discrimination. Whether this fundamental difference in prevention approach affects how well people respond to the dangers of HIV may be one of the questions answered after data from the study are analyzed.
Early Observations
With the African study centers facing the beginning of the 12-month follow-up period, and the other two study centers anticipating their six-month follow-up, it's far too early for results. But the research teams in Africa are already encouraged by the positive effects of the study on some of the participants in the C&T groups.
"One of every five adults we tested at this center is HIV-positive," said Francis Kihuho, the counseling director at the Kenya center in Nairobi. "The high number is depressing, but we are delighted every time someone comes back to tell us they have changed their behavior."
One example is Esther, a commercial sex worker who is a member of the C&T group in Nairobi. She says knowing her HIV-positive status and receiving one-on-one counseling helped her break through her fear and denial and decide not to give up on herself.
"I use condoms now, so I won't re-infect myself or infect anyone else," she said. "I used to suffer a lot from STDs, but not any more."
Dr. Gloria Sangiwa, principal investigator for the Tanzania center at the Muhimbili University College of Health Sciences, also has prevention success stories to tell.
"One couple came in for C&T, although the husband was initially reluctant, because the wife wanted to plan a pregnancy," said Dr. Sangiwa. "A few days later, the husband, now aware of the dangers of AIDS and the need for prevention, returned with his extramarital partner to request C&T for her.
"Unfortunately, the partner tested positive, but, despite the obvious emotional difficulties of the situation, the three are now planning both how to prevent further transmission and how to care for the girlfriend when she becomes ill," she added. "At the center, we think this is extraordinary."
Researchers are also learning more about the difficulties individuals face when they learn their status and about the challenges that counselors encounter during individualized counseling. For example, when a participating couple chooses monogamy as a preventive strategy, new concerns surface.
"If this is the choice a couple decides to make, they face the fact that all sexual needs must therefore be satisfied within that monogamous relationship," said Dr. Balmer. "The specifics are sometimes hard for people to discuss, since in some Nairobi communities there's little vocabulary for discussing sex that's neither coldly scientific nor vulgar."
Dr. Balmer notes how emotionally draining one-on-one counseling can be for counselors in the study.
"We have weekly support meetings among ourselves, for what I would call 'emotional off-loading,'" he said. "We share the burden and support each other."
As work at each of the study sites wraps up throughout 1997, researchers will then turn to analysis of the data. Because of the geographic breadth of the study and the size of the study populations, AIDSCAP and UNAIDS expect the results to be significant for prevention programmers around the world. As funding for HIV/AIDS prevention worldwide shrinks, concerns about the costs of C&T will undoubtedly continue, but the bigger issue -- whether C&T is effective, and ultimately worth the expense -- may soon become clearer.
-- Raphael Tuju
Raphael Tuju of ACE Communications in Nairobi, Kenya, has written extensively and produced several radio and TV programs on the social dimensions of HIV/AIDS in Africa.
