Perceiving One's Own Risk

By Pamela DeCarlo

Each of us routinely accepts a degree of risk in order to accomplish our daily objectives. When you cross the street against traffic in order to catch a bus, you might not consider that your actions are putting you "at risk" for being hit by a car. But confronted with statistics about pedestrian accidents, would you continue to jaywalk?

Many theories of HIV prevention and behavior change have focused on the idea of risk perception - that those who believe they are at risk for HIV will be more likely to protect themselves by avoiding risky behavior. Is this always the case? Studies examining the relationship between one’s belief that he or she is likely to contract HIV and one's level of risky behavior have been inconclusive. However, researchers say that most people who do engage in risky behaviors are worried about getting HIV.

After almost two decades of the AIDS epidemic - and myriad comprehensive education programs - many adults and adolescents know how HIV is transmitted. A national survey by the Henry J. Kaiser Family Foundation showed that 89 percent of respondents thought that by now all adults should know how to protect themselves from HIV infection. In addition, 71 percent thought those who become infected today are more responsible for their circumstances than those infected earlier.

Making Risk Seem Real
But knowledge alone is not enough. Educators who work with youth - a population that has a fast-growing rate of HIV infection - say that the realities of HIV must be presented to young people on a personal level. According to Nels Henderson, youth educator and co-founder of Stop AIDS Now in Santa Barbara, California, many young people don’t appreciate the impact of the HIV unless they have had the opportunity to meet a person who has the disease. "That’s why it’s so important to bring in speakers with HIV. Young people will say, ‘Wow, this happened to them, this is real.’"

Portions of the NAMES Project AIDS Memorial Quilt, a massive memorial made up of thousands of individual tributes to persons who have died of AIDS, have been displayed in schools around the nation. Seeing the diversity of those memorialized in the Quilt and the number of young people represented, many students have commented that viewing the Quilt made them consider their own risk. Students who have viewed the Quilt frequently make comments such as "It changed my life because I now realize that AIDS can affect anyone," and "I saw the name of a person who would be my age if he were alive."

When Earvin "Magic" Johnson announced his retirement from professional basketball in 1991 because he was infected with HIV, the virus became "real" to many Americans - both adults and youth - who still thought it affected only people with whom they shared no connection. One study at a public clinic for the treatment of sexually transmitted diseases (STDs) in suburban Maryland conducted before and after Johnson’s press conference found that participants - primarily sexually active African American men with an average age of 25 - reported fewer unsafe sex practices after the basketball star’s announcement than before.

Combining Messages About Risk
To be effective, messages about risk must be realistic and practical. "Your average high school kid is likely to turn his back on HIV risk and pay more attention to the risks of drinking and driving, for example," says Henderson. He notes that recently youth educators have been combining subjects such as birth control with HIV education. "That gives me hope for continuing to increase knowledge and awareness of HIV in young people. Most youth are more worried about pregnancy than HIV. They see their friends get pregnant, they get it. We should put it all together, that condoms prevent pregnancy and HIV."

Others who work directly with teens agree that a more holistic approach to education is preferable. "Kids need sexuality education, not just biology-based sex education, to develop their sexual identities," says Cassandra Summers, a prevention educator for Action for Boston Community Development. "That is how they can know themselves as sexual beings and protect themselves more effectively - by learning how to communicate."

The Worried Well
There is also a large percentage of the public who constitute the "worried well," people who are worried about HIV but are not at high risk for infection. According to the Centers for Disease Control and Prevention, the majority of clients seeking HIV testing and counseling at publicly funded test sites are considered "worried well."

In 1996, Dr. Peggy Dolcini of the Center for AIDS Prevention Studies (CAPS) at the University of California at San Francisco conducted a study among single heterosexuals in San Francisco to determine their perceptions of their risk for becoming infected with HIV. The study found that while only 9 percent of those sampled believed themselves at risk, more than 40 percent expressed concern that they might contract HIV. "Perceptions differ on cognitive or emotional levels," Dolcini says. "Sometimes people worry about things that don’t necessarily have a high likelihood."

According to Neil Weinstein, professor of human ecology and psychology at Rutgers University, communications about risk must strike a delicate balance. "In communicating risk, the challenge is to heighten the perceptions of those people who underestimate their risk, but not increase the perception of those whose risk is not high," he says. "For example, breast cancer is an issue that is raised so strongly in the media that many women think the probability of getting it is higher than it actually is." In fact, he says, heart disease is a more serious threat for most women.

Hopelessness Leads to Risky Behavior
Within groups that have rates of HIV infection in the United States, many individuals have suffered from poverty, violence, and discrimination. Perception of risk is not a strong motivator when AIDS is just one risk of many, and when the effects of HIV are not immediately felt. The more pressing dangers of hunger, drug addiction, unemployment, and homelessness can take precedence over the risk of developing AIDS in the future. Under these circumstances, desperation and a lack of resources can override one’s concerns about becoming infected with HIV. Drug addicted people, for example, may turn to sex work to pay for drugs, and homeless youth with no means of support may rely on risky behavior for survival.

Feelings of depression and hopelessness can undermine the benefits of prevention education. A study of youth in low-income housing in Brazil found that they became more depressed after an AIDS education program focusing on risk behaviors and risk reduction. Knowing the reality of their situation - that sex takes place rushed in public places, that condoms are prohibitively expensive, and that public health services don’t address their needs - made these youth feel hopeless about their ability to avoid HIV infection.

Passion Overrides Health Concerns
With any pleasurable activity, an intellectual understanding of its risk is often not a strong enough incentive for behavioral change. "Rational thinking is not always compatible with something as emotional and powerful as sexual arousal," says Weinstein. "In the heat of the moment, the thought of using a condom sometimes goes out the window."

Sexual activity is also inseparable from more complex and essential issues such as companionship, intimacy, love, and family. Often one’s need to feel loved is more important than one’s wish to take precautions to prevent HIV infection. Studies with young gay men have shown that, for many, having sex has more than just a physical meaning; it is a way to make friends, increase self-esteem, and feel connected to the gay community.

"There are a lot of costs to changing sexual behavior," Weinstein says. "Negotiating safer sex is often difficult. It can change your partner’s view of you, and imply that there is a lack of trust. There’s also the inconvenience and diminished pleasure of condom use." These are some of the reasons, he says, why people might not engage in safer behaviors even though they believe themselves to be at risk.

Beyond Risk Perception
Although many early HIV-prevention efforts focused on risk perception, more recent HIV-prevention programs have moved beyond individual risk reduction and education and have begun to address HIV on a larger scale through the institutions that serve families and communities. In some cases, treating other problems, such as substance abuse or STDs, has been shown to effectively decrease the incidence of behavior that puts individuals at high risk for HIV infection. In Tanzania, for example, a community-wide effort to diagnose and treat STDs resulted in a 40 percent lower incidence of HIV in communities with the STD program compared with the incidence in communities that did not have the enhanced diagnosis and treatment program.

Does awareness of one’s own risk lead to behavior change? "Risk is a motive to change," says Weinstein, "but it’s not always powerful enough to promote it."

- Pamela DeCarlo is communciations specialist at the Center for AIDS Prevention Studies, University of California, San Francisco.