Preventing Relapse

The work of the affected communities to prevent the spread of HIV infection is one of the bright spots in the history of the AIDS pandemic. Acting initially on their own, and later with government, foundation and corporate support and collaboration, community-based organizations provided their clients with knowledge about how HIV was transmitted. Led by groups serving gay and bisexual men, these efforts expanded to reach injection drug users, women, various ethnic communities, and society at large with the message that they were in danger of infection, that HIV is a preventable disease, and that certain behaviors increase risk.

These early interventions were largely successful in the white gay and bisexual male community. Through the media, public forums, small discussion groups and individual outreach, the community was saturated with information about how to protect oneself from the virus. Free condoms, brochures and pamphlets were distributed.

These campaigns focused on the initial adoption of safer sex behaviors between men. The results were measurable, and early studies showed marked reductions in risky behaviors. These programs were then adapted for use in other communities. Although the impact has not been as immediately impressive in these other communities, researchers have found increased levels of knowledge about HIV, and some compliance with risk-avoiding behaviors.

However, in the late 1980s, new evidence dampened any sense of accomplishment: gay and bisexual men who had participated in educational programs were returning to unsafe sexual behaviors. A new word, relapse, entered the HIV service community's vocabulary.

One definition of relapse is the act or instance of falling back into a former condition or bad habits. In the area of HIV prevention, relapse refers to the resumption of risky behaviors.

This reversion to practices that increase risk of HIV transmission provides new challenges to those working to control the virus. It also poses a grave threat to gays and bisexuals (one report shows seroconversion more than twice as high among men reporting unsafe practices for receptive anal intercourse), and by extension, to all people at risk.

The initial interventions, born in crisis and focusing on knowledge, were not enough to meet the task of infection prevention. Education would require more than merely providing information and would take longer.

Strategies effective in reaching people who already possessed basic information, as well as those newly sexually active, would have to be developed, implemented and supported. The work of maintenance became a new aspect of prevention education.

The Scope of the Problem

Nearly all of the research into the problem of relapse has taken place among gay and bisexual men. This community, which accounts for more than 65% of the reported cases of AIDS [Note: This article was published in the summer of 1992; the percentage of reported cases of AIDS through December 1993 was 54% for gay and bisexual men], has received the most intensive educational and behavioral interventions.

It has also been the most willing to participate in studies examining different facets of the disease. A search of the literature reveals the following insights:

• A study of 470 men in four cities (Kelly et al., 1991) showed that 47% admitted to unprotected anal intercourse in the previous six months, even though they appeared cognizant of the risk (i.e., they had condoms).
• A five-year study in San Francisco showed that relapse from safer sex techniques is now a predominant characteristic of high-risk sex, accounting for more than two-thirds of all prevalent high-risk sex.
• The CDC reports rising rates of rectal gonorrhea among homosexual men, suggesting that some have relaxed their safer practices over time.
• Anecdotal information indicates that gay men under 30, the "second generation" of AIDS, are more likely to engage in higher risk sexual activities.

Although these findings provide information about only one community, they serve as indicators of potential problems for other groups at high risk for infection. Similar results have been found in limited studies of injection drug users. Such findings also provide early warning information for infection prevention programs in the heterosexual community.

Predictors of Relapse: Who are at Risk?

Researchers have discovered a number of significant characteristics among gay men who report resumption of unsafe practices, in particular, receptive anal sex (RAS). Interpersonal and social traits include (Ekstrand et al., 1990):

• younger men who do not have friends or lovers with AIDS
• men with positive feelings toward a partner, or with a strong desire to please the partner
• thrill at the spontaneity of unplanned sex
• men who have a "primary" partner or are in a self-described "mutually exclusive" relationship
• involvement in a peer group where risk reduction norms are not established
• low assertiveness in negotiating safer sex
• lower limit setting skills

On a more personal, individual level, relapse was reported more frequently by those who acknowledged (Kelly, Lawrence and Brasfield, 1991):

• an earlier history of frequent unprotected RAS
• intoxication or substance use preceding sex
• a belief that HIV infection is a matter of outside forces such as luck or chance
• lack of knowledge of one's own HIV status and/or a partner's, and a willingness to believe a partner's claim
• internalized homophobia, lack of self-esteem
• grief and despair due to personal losses
• lower education levels and socioeconomic status

The gay and bisexual men who participated in these studies were white and lived in urban areas where extensive prevention education programs has been in operation for years. How constant these predictors are with other populations is not yet known.

Data seem to indicate that sub-populations; gay and bisexual men of color, gay and bisexual drug abusers, those living in rural areas, the homeless and those who have just "come out", continue to have higher sexual risk for HIV infection. Studies show higher levels of behavioral risk in African American and Latino gay and bisexual men, who are overrepresented in the AIDS caseload (Ekstrand et al., 1990).

Information on relapse among those who have been primary recipients of safer sex campaigns offers direction for modifying existing programs that target other groups. It also offers guidance for those attempting to reach communities of color, women, youth and the heterosexual population.

Strategies for Relapse Prevention

The challenge of relapse affirms the need for constant and chronic interventions addressing initial risk reduction, complemented by programs focusing on maintenance of safer sex behaviors. Knowledge must be provided on an ongoing basis in ways that are culturally sensitive and appropriate.

Despite almost a decade of HIV prevention education programs, research shows that communities outside the mainstream of educational efforts still fail to realize they are at risk, or retain beliefs that inhibit adopting effective preventive behaviors (e.g., the belief among some teens that birth control pills prevent HIV infection).

Relapse tells us that providing information alone will not change behaviors. Prevention education programs must take a more comprehensive approach, focusing on numerous factors that influence sexual behaviors. Relapse prevention efforts should address the need for knowledge, changing attitudes and beliefs, and skills building.

Knowledge

There is a continuing need for the dissemination of health promotion information to all parts of society. The barrage of calls to HIV service providers following Earvin "Magic" Johnson's announcement in November, 1992 revealed a large amount of misunderstanding and misinformation about the virus.

To combat relapse, information about safer sexual practices must be as specific as community norms allow. If the goal is 100% safer sex 100% of the time, there cannot be any confusion about the riskiness of certain behaviors.

Gay and bisexual men, especially, need a consistent message that addresses questions about perceived mixed signals. Questions include: What is the riskiness of oral sex? of anal sex without ejaculation? of using more than one condom at a time? Lack of uniform responses to these questions increases doubts about the validity of the entire message.

Credible channels are especially important for those who have traditionally been underserved by health services or have reason to be suspicious of government-sponsored messages. For example: In the African American community, the popular belief that AIDS is part of officially sponsored genocide is supported by memories of the Tuskegee Syphilis Study, in which treatment was deliberately withheld from the Black men who were subjects of the study (Thomas and Quinn, 1991).

The combined use of media, hotlines, street outreach programs, recognized spokespersons and trained peers can provide both formal and informal sources of information. Using a variety of sources helps promote wider acceptance of information.

Mental health workers, nurse practitioners and primary care physicians are important and often underused channels. Such people can offer information in settings where privacy is protected and the fears of stigma are reduced. To give the message the greatest impact, maximum visibility is the goal.

Attitudes and Beliefs

Changing people's behaviors requires helping them to realize that they are at risk, that the consequences of infection are serious, and that the advantages of remaining HIV-negative outweigh the perceived negatives associated with safer sex practices. But these realizations are only the beginning.

Before people change, they must also believe themselves to be competent to practice safer behaviors in the situations they face in their everyday lives. Thus, they need skill training that is both technical (correct condom use) and situational (negotiating skills). The goal of such training is to help people feel confident they can successfully meet resistance from partners and comfortable with setting limits to protect themselves.

To achieve long-term commitment to changes in attitudes and beliefs, individuals need groups where they can find the support and encouragement of others. The experiences of Weight Watchers, Alcoholics Anonymous and other twelve-step groups should be considered in the design of relapse prevention programs.

Peer reinforcement of positive changes should be available in all communities, as it is through STOP AIDS in larger urban areas. These groups reinforce the message given through media and other outlets and help to change norms in the smaller, more immediate community in which a client lives.

They also allow the "outing" of the issue in a safer setting, where those struggling with unsafe behaviors receive nonjudgmental understanding and support. In areas where such groups are not practical, or to reach those resistant to personal interaction about this topic, one-on-one telephone support or the innovative use of conference calls can provide safe and secure access.

Programs also need to address the belief that safer sex is boring and without pleasure. Enjoyment of something builds commitment, from exercise to dieting to sex. Workshops that eroticize safer sex, roleplaying exercises and videos for home use can help overcome barriers to adopting and maintaining safer sex practices.

This is not a time for prudery; a sense of humor and acceptance of all varieties of safer sexual behavior will make the health message seem more attractive and less of a sacrifice. Such an approach is especially important for younger gays whose understanding of "the good old days" causes resentment against limits, for women who traditionally have not been raised to take a leading role in sexual activities, and for those whose taste for exotica often puts them at risk.

Skills Building

Knowledge and support will be ineffective if people are not confident that they know what to do. Proper condom usage needs to be taught in explicit language and pictures, using pamphlets and brochures and appropriate models. Frankness is critical, for confusion can put someone at risk, and failure will inhibit any future compliance.

Roleplaying scripts need to identify high-risk situations, address real concerns, and provide coping strategies in response to signals of risk. These are effective tools in building people's trust in their own capabilities.

In for the Long Haul

The problem of relapse should have come as no surprise, but it is still frustrating to those involved in health education and promotion. Achieving initial adoption of safer behaviors is important; maintaining those changes is as valuable, and a greater challenge.

Interventions to achieve maintenance of new behaviors cannot be a one-shot deal, as many programs were originally designed. To provide all that is require, individual programs need to be multi-session.

Every aspect of the program must be repeatedly offered to both previous and new clients in a context where information is provided with support. Government and community-based organizations need to maintain a long-range view of the problem in order to sustain their commitment and avoid the frustration that arises when results are not immediate.

Programs that serve the gay and bisexual community are valuable resources for other parts of society; they have been the trailblazers. Their experience needs to be shared in planning for the occurrence of relapse in those groups that are just now receiving the basic prevention message.

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