© 2002 American Public Health Association
The authors are with the Department of Psychology, University of California at Davis. Correspondence: Requests for reprints should be sent to Gregory M. Herek, PhD, Department of Psychology, University of California, 1 Shields Ave, Davis, CA 956168686 (e-mail: gmherek{at}ucdavis.edu).
Objectives. This study assessed the prevalence of AIDS stigma and misinformation about HIV transmission in 1997 and 1999 and examined trends in stigma in the United States during the 1990s. Methods. Telephone surveys with national probability samples of English-speaking adults were conducted in the period 1996 to 1997 (n = 1309) and in 1998 to 1999 (n = 669). Findings were compared with results from a similar 1991 survey. Results. Overt expressions of stigma declined throughout the 1990s, with support for its most extreme and coercive forms (e.g., quarantine) at very low levels by 1999. However, inaccurate beliefs about the risks posed by casual social contact increased, as did the belief that people with AIDS (PWAs) deserve their illness. In 1999, approximately one third of respondents expressed discomfort and negative feelings toward PWAs. Conclusions. Although support for extremely punitive policies toward PWAs has declined, AIDS remains a stigmatized condition in the United States. The persistence of discomfort with PWAs, blame directed at PWAs for their condition, and misapprehensions about casual social contact are cause for continuing concern and should be addressed in HIV prevention and education programs. (Am J Public Health. 2002;92:371377)
People with AIDS (PWAs) and the social groups to which they belong have been stigmatized worldwide since the epidemic began.14 Stigma has interfered with effective societal response to AIDS and has imposed hardships on people living with HIV as well as their loved ones, caregivers, and communities.57 PWAs have been shunned by strangers and family members, discriminated against in employment and health care, driven from their homes, and subjected to physical abuse.813 Fear of stigma has deterred individuals from being tested for HIV and from disclosing their seropositive status to sexual partners, family, and friends.6,1316 Among the US public, AIDS stigma has been manifested as anger and other negative feelings toward PWAs, the belief that they deserve their illness, avoidance and ostracism, and support for coercive public policies that threaten their human rights.4,1719 Stigmatizing attitudes are strongly correlated with misunderstanding the mechanisms of HIV transmission and overestimating the risks of casual contact2024 and with negative attitudes toward social groups disproportionately affected by the epidemic, especially gay men and injecting drug users.20,2326 Early in the epidemic, concerns about stigma led to public health policies that reflected "a commitment to rely on prevention measures that were noncoercivethat respected the privacy and social rights of those who were at risk."27 In the 1990s, however, policy debates in the United States raised questions about whether and to what extent AIDS stigma remained a widespread problem. By the end of the century, many public health advocates had abandoned the philosophy sometimes characterized as "AIDS exceptionalism." As Bayer summarized in 1999, "Practices uniquely informed by a commitment to privacy rights are increasingly vulnerable to challenge as despair and therapeutic impotence give way to a (perhaps premature) therapeutic triumphalism."27 Nevertheless, many AIDS researchers, physicians, and community-based advocates continue to oppose policies such as named reporting of HIV-infected individuals, arguing that ongoing fears of prejudice and discrimination are rational and realistic and still play a significant role in personal decisions to seek HIV testing and treatment.2831 Empirical data about the extent to which stigma actually persists would be highly useful for formulating health policy about this and other AIDS-related issues. Moreover, AIDS educators could use such data in designing programs that not only prevent HIV transmission but also help to reduce the persecution of PWAs. This report describes the prevalence and nature of AIDS-related stigma in the United States, using data from surveys conducted with national probability samples of US adults in 1997 and 1999. In addition, we identify trends in stigma throughout the 1990s by examining data from the present study in conjunction with previously reported findings from a comparable 1991 survey.4
Sample and Procedure 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 with a list-assisted random-digit-dialing procedure.32 This method yielded 2009 eligible households that were contacted between September 1996 and March 1997. Interviews were fully or substantially completed with 1309 individuals, yielding a final response rate of 65.1%. The 1997 sample was 55.3% female and 79% non-Hispanic White, with a mean age of 44 years (range = 1893), a median educational level of 1 to 2 years of college or postsecondary school, and a median household income of $40 000 to $50 000. Approximately 2 years later (between September 1998 and May 1999), another survey was conducted with a new sample, referred to hereafter as the 1999 survey. It used the same sampling frame and random-digitdialing procedure as the 1997 survey. A total of 1153 eligible households were contacted, and interviews were fully or substantially completed with 669 households, yielding a final response rate of 58%. The 1999 sample was 55% female and 82% non-Hispanic White, with a mean age of 45 years (range = 1889), a median educational level of some college, and a median household income of $40 000 to $50 000. The Survey Research Center at the University of California at Berkeley conducted all interviews for both surveys, using their computer-assisted telephone interviewing system. No limit was set on the number of recontact attempts for each number. Upon reaching an adult, the interviewer ascertained the first names of all household members 18 years or older and created a tally of their names. The target respondent was selected at random from that list. The median duration of the interview was 44 minutes in both years. To examine trends, we compare data from the 1997 and 1999 surveys with findings from a previously reported 19901991 national telephone survey (hereafter referred to as the 1991 survey). The 1991 survey results presented below use unweighted data and are based on that study's primary sample (n = 538), which was selected with random-digit-dialing procedures and interview methods comparable to those used in the 1997 and 1999 surveys. Methodological details for the 1991 survey have been reported elsewhere.4,20,21,33
Measures
AIDS Stigma Previous research has shown that AIDS stigma is expressed in a variety of ways.4,5,1924 Accordingly, the survey protocol assessed multiple facets of it. Questions were included about support for stigmatizing AIDS policies (quarantine, publicly identifying PWAs), support for mandatory testing (of pregnant women, immigrants, and people perceived to be at high risk), attributions of responsibility and blame to PWAs (the belief that PWAs are responsible for their disease, that they deserve it), beliefs about PWAs (that they do not care about infecting others), affective responses to PWAs (anger, fear, disgust), and discomfort with and avoidance of PWAs in hypothetical situations (having one's child attend school with a PWA, working in an office with a PWA, patronizing a neighborhood grocer who has AIDS).
Beliefs About HIV Transmission Symbolic contact and magical contagion. We assessed exaggerated and seemingly irrational fears about HIV contagion through mere contact with an object that had once been touched by a person with AIDS (e.g., a sweater, a drinking glass). This phenomenon has been described elsewhere as belief in the magical law of contagion.34,35 We first asked respondents about their willingness to wear "a very nice sweater that had been worn once by another person who you didn't know" and that had been "cleaned and sealed in a new plastic package so that it looked like it was brand new." We 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." We also asked how comfortable the respondent would feel about drinking out of a washed and sterilized glass in a restaurant if someone with AIDS had drunk out of the same glass a few days earlier. Trust of experts. While inaccurate beliefs about how HIV is transmitted often reflect lack of information, they can also result from mistrust of health experts.21 We measured such mistrust with 2 questions. Respondents reported their level of agreement with the statement, "Scientists and doctors can be trusted to tell us the truth about AIDS." They also indicated the extent to which they believed scientists' and doctors' assertions that AIDS is not spread by casual contact.
Analysis of Trends
For purposes of the present discussion, we assume that changes in opinion were linear and consistent across the years in which data were not collected. The validity of this assumption cannot be tested with the current data. Our primary focus, however, is on trends during the 1990s, and we believe that describing these trends in terms of average amount of change per year is an appropriate way to gauge their magnitude. Statistically significant odds ratios (P < .05) are reported in Tables 1 through 3
Support for Punitive Policies At the beginning of the decade, approximately one third of survey respondents supported quarantine, and nearly as many (29%) endorsed public disclosure. In 1997, by contrast, about 1 respondent in 6 endorsed policies of quarantine and fewer than 1 in 5 supported public disclosure of the names of PWAs. By 1999, the proportions were lower still (Table 1 In 1997, substantial majorities supported mandatory testing for pregnant women (83%), people considered to be at high risk for AIDS (74%), and immigrants (78%). By 1999, support for mandatory testing of high-risk individuals had dropped significantly, to 64%, and support for testing immigrants had declined to 74%. Support for testing pregnant women remained substantially unchanged.
Negative Feelings Toward PWAs
Responsibility and Blame
Beliefs About HIV Transmission
In 1991 and 1997, relatively few respondents (17% and 13%, respectively) believed that AIDS could be transmitted by a kiss on the cheek (Table 2 These incorrect beliefs cannot be explained simply as the result of public mistrust of scientists' pronouncements about HIV transmission.21 Indeed, such mistrust is relatively uncommon. In the 1997 and 1999 surveys, more than two thirds of respondents agreed that "scientists and doctors can be trusted to tell us the truth about AIDS." More than four fifths reported that they believed scientists' assertions that AIDS is not spread through casual contact (and the odds of believing scientists increased throughout the 1990s). As might be expected, respondents expressing skepticism tended to believe that various types of casual contact could transmit AIDS. In 1997, for example, 57% of those reporting that they did not believe scientists also said that AIDS could be transmitted by sharing a drinking glass. However, the belief that AIDS could be transmitted this way was also expressed by 52% of the respondents who said that they believed scientists.
Discomfort and Avoidance
Although relatively few respondents said that they would actually take steps to avoid a coworker with AIDS or to prevent their children from interacting with a child with AIDS, considerably more felt uncomfortable about contact with PWAs. As shown in Section 2 of Table 3
Section 3 of Table 3
Summary Index of Stigma Stigma index scores declined significantly across the 3 surveys. The mean number of stigmatizing responses was 2.6 in 1991 (SE = 0.11), 1.7 in 1997 (SE = 0.06), and 1.5 in 1999 (SE = 0.08). The linear term explained a significant proportion of variance in index scores (R2 = .031; b = 0.132; P < .001). The quadratic term was not significant (P > .20). The proportion of respondents that gave no stigmatizing responses (i.e., index score = 0) nearly doubled between 1991 and 1999, from 21% to 39%. Nevertheless, 20% of respondents gave stigmatizing responses to 3 or more of the items in 1999, compared with 25% in 1997 and 38% in 1991.
The survey trends yield both hopeful and disturbing findings about AIDS stigma among the US adult public. On the hopeful side, overt expressions of stigma appear to have declined over the 1990s. The most punitive aspects of AIDS stigmasupport for quarantine and public identification of PWAsdiminished considerably, with fewer than 1 in 5 adults still supporting such measures by 1999. A similar pattern was evident for negative feelings toward PWAs. And, by the decade's end, relatively few respondents said that they would avoid a male coworker or a schoolchild with AIDS. Nevertheless, it is disturbing that in 1999nearly 2 decades after the beginning of the AIDS epidemic in the United Statesone fifth of those surveyed still feared PWAs and one sixth expressed disgust or supported public naming of PWAs. In addition, the surveys revealed that more covert forms of stigma persist. Even in 1999, roughly one fourth of respondents felt uncomfortable having direct or symbolic contact with a PWA. It is important to recognize that attitudes such as these do not necessarily predict specific behaviors in any particular situation. However, social psychological research suggests that such attitudes often find expression in an individual's ongoing pattern of behavior.36 Thus, feelings of discomfort might well translate into avoidance or discrimination in some real-world interactions. Indeed, nearly one third of respondents said that they would avoid shopping at a neighborhood grocery store whose owner had AIDS. The surveys also revealed troubling signs that the sorts of beliefs and opinions that provide a foundation for AIDS stigma continue to be widespread. The proportion of adults believing that a person infected with HIV through sex or drug use deserves to have AIDS increased over the decade, peaking in 1997. When the question was framed in less harsh terms, approximately one half of respondents perceived PWAs to be responsible for their illness. This pattern is worrisome because individuals with an undesirable condition are generally subjected to greater stigma when they are perceived to be personally responsible for their situation.37 In the case of AIDS, such perceptions may be an unintended consequence of public education campaigns that stress the importance of personal decision making in HIV prevention. If so, health educators face the challenge of communicating the importance of protecting oneself from AIDS without promoting increased blame for individuals who become infected. Of further concern is the fact that although respondents understood how HIV is transmitted, they were much less clear about how it is not transmitted. Indeed, the proportions overestimating the risks posed by some forms of casual social contact were higher in 1997 and 1999 than in 1991. Those who believe that HIV can be spread through casual social contact are probably more likely to fear such contact with PWAs and may be more willing in the future to support punitive policies that violate PWAs' human rights under the guise of protecting public health. Such fears may partly account for the widespread support for mandatory testing of various groups. Although such support declined to some extent between 1997 and 1999, mandatory testing continued to be favored by most respondents. The survey results have at least 2 important implications for public health. First, they suggest that AIDS educational efforts have effectively communicated how HIV is transmitted but have been less successful in convincing the public that AIDS is not spread through casual social contact. Some respondents who doubted the safety of casual contact were skeptical of scientists, but most reported that they believe scientists who say that AIDS is not transmitted through casual contact. Thus, AIDS educators and public health workers may be able to counter misperceptions about HIV transmission simply by ensuring that AIDS education messages include clear information about how HIV is not transmitted, a practice that was common in the 1980s. Second, public health policy should recognize that AIDS stigma persists in the United States. One fifth of respondents gave 3 or more stigmatizing responses on the 9-item index in 1999. Still more indicated some degree of discomfort in social interactions with PWAs. Given that these respondents represent a large number of adults, it is understandable that many PWAs fear the consequences of stigma when their diagnosis becomes known to others. Such fears are likely to have detrimental effects on PWAs and persons at risk for HIV. They will also affect the success of programs and policies intended to prevent HIV transmission. Thus, eradicating AIDS stigma remains an important public health goal for effectively combating HIV.
The research described in this report was supported by grants to G. M. H. from the National Institute of Mental Health (R01 MH55468 and K02 MH01455). The authors express their deepest gratitude to the late Karen Garrett as well as to Tom Piazza and the staff of the Survey Research Center, University of California at Berkeley, for their assistance throughout the project.
G. M. Herek conceived and designed the study, with assistance from J. P. Capitanio. G. M. Herek, J. P. Capitanio, and K. F. Widaman jointly planned the data analyses. J. P. Capitanio and K. F. Widaman executed the data analyses. G. M. Herek wrote the paper, with assistance from J. P. Capitanio and K. F. Widaman. Accepted for publication May 1, 2001.
1. Mann JM, Tarantola DJM, Netter TW, eds. AIDS in the World. Cambridge, Mass: Harvard University Press; 1992. 2. Herek GM, Glunt EK. An epidemic of stigma: public reactions to AIDS. Am Psychol.1988;43:886891.[Medline] 3. Farmer P. AIDS and Accusation: Haiti and the Geography of Blame. Berkeley: University of California Press; 1992.
4.
Herek GM, Capitanio JP. Public reactions to AIDS in the United States: a second decade of stigma. Am J Public Health.1993;83:574577. 5. Herek GM, Mitnick L, Burris S, et al. AIDS and stigma: a conceptual framework and research agenda. AIDS Public Policy J.1998;13:3647.[Medline]
6.
Chesney MA, Smith AW. Critical delays in HIV testing and care: the potential role of stigma. Am Behav Sci.1999;42:11621174.
7.
Snyder M, Omoto AM, Crain AL. Punished for their good deeds: stigmatization of AIDS volunteers. Am Behav Sci.1999;42:11751192. 8. Herek GM. Illness, stigma, and AIDS. In: Costa PT Jr, VandenBos GR, eds. Psychological Aspects of Serious Illness: Chronic Conditions, Fatal Diseases, and Clinical Care. Washington, DC: American Psychological Association; 1990:107150. 9. The 3rd Epidemic: Repercussions of the Fear of AIDS. Budapest, Hungary: Panos Institute; 1990. 10. Gostin LO, Webber D. The AIDS litigation project: HIV/AIDS in the courts in the 1990s, part 2. AIDS Public Policy J.1998;13:319.[Medline] 11. A Profile of the Challenges Facing Americans Living With HIV. Washington, DC: National Association of People With AIDS; 1992.
12.
Zierler S, Cunningham WE, Andersen R, et al. Violence victimization after HIV infection in a US probability sample of adult patients in primary care. Am J Public Health.2000;90:208215. 13. Gielen AC, O'Campo P, Faden RR, Eke A. Women's disclosure of HIV status: experiences of mistreatment and violence in an urban setting. Women Health.1997;25:1931.[Medline] 14. Derlega VJ, Lovejoy D, Winstead BA. Personal accounts on disclosing and concealing HIV-positive test results: weighing the benefits and risks. In: Derlega VJ, Barbee AP, eds. HIV and Social Interaction. Thousand Oaks, Calif: Sage; 1998:147164. 15. Simoni JM, Mason HRC, Marks G, Ruiz MS, Reed D, Richardson JL. Women's self-disclosure of HIV infection: rates, reasons, and reactions. J Consult Clin Psychol.1995;63:474478.[Medline] 16. Lester P, Partridge JC, Chesney MA, Cooke M. The consequences of a positive prenatal HIV antibody test for women. J Acquir Immune Defic Syndr Hum Retrovirol.1995;10:341349.[Medline] 17. Blendon RJ, Donelan K. Discrimination against people with AIDS: the public's perspective. N Engl J Med.1988;319:10221026.[Medline]
18.
Blendon RJ, Donelan K, Knox RA. Public opinion and AIDS: lessons for the second decade. JAMA.1992;267:981986.
19.
Singer E, Rogers TF, Corcoran M. The polls: AIDS. Public Opin Q.1987;51:580595. 20. Herek GM, Capitanio JP. AIDS stigma and contact with persons with AIDS: the effects of personal and vicarious contact. J Appl Soc Psychol.1997;27:136. 21. Herek GM, Capitanio JP. Conspiracies, contagion, and compassion: trust and public reactions to AIDS. AIDS Educ Prev.1994;6:365375.[Medline] 22. Herek GM, Glunt EK. AIDS-related attitudes in the United States: a preliminary conceptualization. J Sex Res.1991;28:99123.
23.
Stipp H, Kerr D. Determinants of public opinion about AIDS. Public Opin Q.1989;53:98106.
24.
Price V, Hsu M. Public opinion about AIDS policies: the role of misinformation and attitudes toward homosexuals. Public Opin Q.1992;56:2952. 25. St Lawrence JS, Husfeldt BA, Kelly JA, Hood HV. The stigma of AIDS: fear of disease and prejudice toward gay men. J Homosexuality.1990;19:85101. 26. Pryor JB, Reeder GD, Vinacco R Jr, Kott TL. The instrumental and symbolic functions of attitudes toward persons with AIDS. J Appl Soc Psychol.1989;19:377404.
27.
Bayer R. Clinical progress and the future of HIV exceptionalism. Arch Intern Med.1999;159:10421048. 28. Rotello G. AIDS is still an exceptional disease. New York Times. August 22, 1997:A19. 29. Burris S. Surveillance, social risk, and symbolism: framing the analysis for research and policy. J Acquir Immune Defic Syndr.2000;25(suppl 2):S120S127.
30.
Solomon L, Benjamin G. National HIV case reporting [letter]. N Engl J Med.1998;338:626. 31. Woods WJ, Binson D, Morin S, Dilley JW. HIV testing after implementation of name-based reporting [letter]. JAMA.1999;281:1378. 32. Casady RJ, Lepkowski JM. Stratified telephone survey designs. Survey Methodol.1993;19:103113. 33. Herek GM, Capitanio JP. Symbolic prejudice or fear of infection? A functional analysis of AIDS-related stigma among heterosexual adults. Basic Appl Soc Psychol.1998;20:230241. 34. Rozin P, Markwith M, McCauley C. Sensitivity to indirect contacts with other persons: AIDS aversion as a composite of aversion to strangers, infection, moral taint, and misfortune. J Abnorm Psychol.1994;103:495504.[Medline] 35. Rozin P, Markwith M, Nemeroff C. Magical contagion beliefs and fear of AIDS. J Appl Soc Psychol.1992;22:10811092. 36. Eagly AH, Chaiken S, eds. The Psychology of Attitudes. Ft Worth, Tex: Harcourt Brace Jovanovich; 1993. 37. Weiner B. AIDS from an attributional perspective. In: Pryor JB, Reeder GD, eds. The Social Psychology of HIV Infection. Hillsdale, NJ: Lawrence Erlbaum; 1993:287302. This article has been cited by other articles:
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