Stigma and the General Population

Within the literature and within policy and care settings, much attention has been given to stigmatizing attitudes related to HIV/AIDS. Perhaps no contribution has been more significant than that of Gregory M. Herek, Ph.D., a professor of psychology at the University of California at Davis who is an internationally recognized authority on prejudice against lesbians and gay men, hate crimes and antigay violence, and HIV-related stigma. Herek’s work frames much of the following discussion about stigma in the general population.

Herek (1990) observed that gay men and injection drug users are disproportionately susceptible to HIV-related stigma and discrimination. He has found that HIV-related stigma is not necessarily a stigma of the diseased; rather, it is often related to perceived lifestyle “choices” of infected populations or to perceptions about racial and ethnic minorities. In contrast, people who acquire HIV through no action of their own (for example, hemophiliacs and babies of HIV-positive women) have been referred to as “innocent” or “blameless.”

Herek (1990) referred to previous studies that found that people with AIDS are evaluated more negatively than people diagnosed with other incurable diseases, even by health care workers. He also cited studies that found that it was common for caregivers to avoid people with AIDS and to overestimate the risks of casual contact with people living with HIV/AIDS.

HIV/AIDS-related stigma extends beyond individuals living with HIV/AIDS to volunteers, caregivers, coworkers, and professionals who provide HIV/AIDS services or advocacy. For example, some patients will switch medical providers when they learn that their provider is HIV positive or cares for HIV-positive patients. Herek (1997) referred to a 1991 study by Gerbert showing that individuals who had direct contact with an HIV-positive person were less likely than those who had no contact with an HIV-positive person to switch health care providers on the basis of the HIV status of the provider or the provider’s patients.

Herek and Capitanio (1993) found that HIV/AIDS-related stigma exists in a “significant minority” of the U.S. population. They used a 1991 random-digit telephone survey to examine stigmatizing attitudes about HIV/AIDS. Of the 1,145 households surveyed, 538 were defined as “black” households. Responses differed little by race. The authors found that 27.1 percent of all participants gave a “stigmatizing response” when asked if they felt angry towards people with AIDS. When asked if people living with AIDS should be separated from the general population, 35.7 percent of the participants gave a stigmatizing response.

When participants in the 1991 telephone survey were asked if people with AIDS have “gotten what they deserved,” 20.5 percent of white respondents and 16.5 percent of black respondents said yes. Thirty-three percent of white respondents agreed that people with AIDS should be legally separated, or quarantined, compared with 40 percent of black respondents. And 19.2 percent of white respondents said they would avoid a coworker with AIDS, compared with 21.1 percent of black respondents. White women were the least likely of any group surveyed to overestimate the risks of casual contact or to anticipate that they would avoid people with AIDS (Herek and Capitanio, 1993).

HIV-Related Stigma in the United States: Prevalence and Trends, 1991-1999(a)
Support for Coercive AIDS-Related Policies
Percent responding “agree somewhat” or “strongly agree.”
1991 1997 1999
People with AIDS should be legally separated from others to protect the public health. 34.4% 16.6% 12.0%
The names of people with AIDS should be made public so that others can avoid them. 28.8% 18.6% 16.3%
Women who are pregnant should be required to be tested for the AIDS virus in order to protect the health of their unborn baby. N/A 83.0% 81.9%
People at risk for getting AIDS should be required to be tested regularly for the AIDS virus. N/A 73.8% 63.5%
People from other countries who want to live in the United States should first be required to have an AIDS test to prove they are not infected with the AIDS virus. N/A 77.5% 74.1%
Attributions of Responsibility and Blame for People with HIV/AIDS
Percent responding “agree somewhat” or “strongly agree.”
1991 1997 1999
People who got AIDS through sex or drug use have gotten what they deserve. 20.3% 28.1% 24.8%
Most people with AIDS don’t care if they infect other people with the AIDS virus. N/A 25.5% 21.8%
Most people with AIDS are responsible for having their illness. N/A 53.5% 48.3%
Inaccurate Beliefs About HIV Transmission
Percent of respondents incorrectly believing that the listed activity is “very likely,” “somewhat likely,” or “somewhat unlikely” to transmit AIDS. (The responses “very unlikely” and “impossible” were counted as correct responses).
1991 1997 1999
Kissing someone on the cheek who has the AIDS virus. 17.1% 13.3% N/A
Sharing a drink out of the same glass with someone who has the AIDS virus. 47.6% 53.2% 50.1%
Using public toilets. 34.0% 40.9% 40.8%
Being coughed on or sneezed on by someone who has the AIDS virus. 45.7%

 53.6%

 50.4%
Donating or giving blood. 32.2% 28.9% 32.9%
“Exaggerated and Seemingly Irrational Fears” About HIV Contagion
Researchers measured respondents’ exaggerated fears about contracting HIV through “symbolic” contact with an object that had once been touched by a person with AIDS. This phenomenon has also been described as “belief in the magical law of contagion.”
1991 1997 1999
Less likely to wear sweater once worn by PWA.(b) N/A 26.8% 25.7%
Uncomfortable about drinking out of a washed, sterilized glass in a restaurant that had been used a few days earlier by a PWA.(c) N/A 26.9% 25.7%
Discomfort and Avoidance of Contact With People With HIV/AIDS
1991 1997 1999
Suppose you had a young child who was attending school where one of the students was known to have AIDS.
Percentage who would feel “somewhat” or “very” uncomfortable. N/A 26.6% 30.3%
Percent who would avoid person with AIDS. 14.9% 9.9% 8.5%
Suppose you worked in an office where one of the men working with you developed AIDS.
Percentage who would feel “somewhat” or “very” uncomfortable. N/A 24.7% 22.4%
Percent who would avoid person with AIDS. 18.6% 11.7% 9.1%
Suppose you found out that the owner of a small neighborhood grocery store where you liked to shop had AIDS.
Percentage who would feel “somewhat” or “very” uncomfortable. N/A 28.6% 27.2%
Percent who would avoid person with AIDS.
 45.2% 32.2% 29.3%

a) All the data in this chart appeared in an article by Herek GM, et al. in 2002. Interviews for the 1997 and 1999 surveys were conducted by the Survey Research Center at the University of California at Berkeley, using their computer-assisted telephone interviewing (CATI) system. The median duration of the interview was 44 minutes. For the 1997 survey, the sampling frame was the population of all English-speaking adults (at least 18 years of age) residing in households with telephones within the 48 contiguous states. The sample was drawn using a list-assisted Random Digit Dialing (RDD) procedure. Interviews were fully or substantially completed with 1,309 respondents (a response rate of 65.1%). The 1999 survey was conducted with a new sample, using the same sampling frame and RDD procedure as the 1997 survey. Interviews were fully or substantially completed with 669 respondents, (a response rate of 58%). Data from the 1997 and 1999 surveys were compared with findings from the research team’s 1991 national telephone survey. The 1991 survey results presented use unweighted data and are based on that study’s primary sample (N = 538), which was selected using a methodology comparable to the later surveys. More detailed information about the methodology is available in the original report.

b) Percentage whose self-rated likelihood of wearing sweater worn by PWA was lower than previously rated likelihood of wearing another sweater. Respondents were asked about their willingness to wear “a very nice sweater that had been worn once by another person who you didn’t know” and had been “cleaned and sealed in a new plastic package so that it looked like it was brand new.” Respondents were then asked about the likelihood that they would wear the same sweater if they “found out that the person who had worn it the one time before had AIDS.”

c) Percentage who would feel “not very comfortable” or “not at all comfortable” about drinking out of a washed, sterilized glass used a few days earlier by a PWA.

Source: Herek GM, Capitanio JP, Widaman KF. HIV-related stigma and knowledge in the United States: prevalence and trends, 1991-1999. Am J Public Health. 2002;92(3):371-7. Available at: http://psychology.ucdavis.edu/rainbow/html/ajph2002.pdf.

Herek and Capitanio conducted follow-up telephone surveys in 1992 and 1997, both of which used similar methodology. The authors documented what appeared to be increasing levels of stigma and a “hierarchy of blame” regarding HIV/AIDS (Herek and Capitanio, 1999). They wrote, “In our 1991 survey, for example, 20.5 percent of respondents agreed that ‘people with AIDS have gotten what they deserve.’ Approximately 6 years later, in the 1997 survey, 28.8 percent agreed with the statement, an increase of roughly 40 percent” (p. 1128). Even more of the 1997 respondents assigned some degree of responsibility when the question was framed less harshly. For example, 55.1 percent agreed that “most people with AIDS are responsible for their own illness” (Herek and Capitanio, 1999). The authors drew four major conclusions about HIV/AIDS-related stigma in the United States:

  1. Most of the heterosexual adults who were surveyed equate AIDS with homosexuality or bisexuality and in turn, harbor higher levels of prejudice.
  2. Much of the public continues to label people with AIDS as blameworthy or innocent; moreover, among those who contracted AIDS through sexual activity, gay men are viewed more negatively than are heterosexuals.
  3. Some portions of the public equate any same-sex behavior with AIDS; misconceptions and a lack of understanding about AIDS promote the view that all homosexual behavior eventually leads to AIDS.
  4. A substantial portion of the public harbors exaggerated fears about “symbolic” contact with HIV-positive people, such as touching an article of clothing worn by a person living with HIV disease. These attitudes are most prevalent among people who harbor sexual prejudice (Herek and Capitanio, 1999).

Herek and Capitanio also examined the relationship between HIV-related stigma and direct or vicarious contact with people with AIDS. Study results indicated that contact with a person living with HIV disease reduced stigma and that such contact was more likely among relatively affluent individuals—those with at least some college and annual incomes greater than $40,000 (Herek and Capitanio, 1997).

There is some evidence that HIV/AIDS-related stigma declined over the 1990s. For example, in 2000, the CDC published results from a study of 5,641 people in which 18.1 percent of participants gave a response suggesting that they harbor stigmatizing attitudes toward HIV-positive individuals. Herek et al. (2002) described findings from their 1999 telephone survey that also indicates that some expressions of stigma declined over the 1990s. The proportion of people advocating the most drastic measures—quarantine and public identification—significantly diminished. However, although most people surveyed understood how AIDS is transmitted, they were less clear on how AIDS is not transmitted. And despite reductions in stigma, one-fifth of those surveyed feared people with AIDS, and one-fourth felt uncomfortable having contact with people with AIDS. Another result underlines the power of stigma to extend to the economic realm: Nearly one-third of respondents said that they would avoid shopping at a neighborhood grocery known to be owned by a person with AIDS.

Other studies have tried to better define populations who harbor HIV-related stigma and who may practice discrimination. Rozin et al. (1994) cited a study that reported an association between fear of AIDS and regular church attendance. Herek and Capitanio (1998) found that 41 percent of heterosexual adults based their HIV-related attitudes on religious or political values; only 13 percent based their attitudes on concerns for personal safety. Herek (1999) cited several studies finding that younger and more highly educated people typically manifest lower levels of HIV-related stigma than do older people and those who are less educated.

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