|
HIV-Related
Stigma and Knowledge in the
United
States: Prevalence and Trends,
1991–1999
Gregory
M. Herek, PhD, John P. Capitanio, PhD and
Keith
F. Widaman, PhD
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 95616–8686 (e-mail: gmherek@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;92:371–377)
This article has been cited by other
articles:
Valdiserri, R.
O. (2002). HIV/AIDS Stigma: An Impediment to Public Health. Am
J Public Health 92: 341-342
Levi, J.
(2002). Ensuring Timely Access to Care for People With HIV
Infection: A Public Health Imperative. Am J Public Health 92:
339-340
HIV-Related
Stigma and Knowledge in the
United
States: Prevalence and Trends,
1991–1999
Gregory
M. Herek, PhD, John P. Capitanio, PhD and
Keith
F. Widaman, PhD
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
95616–8686 (e-mail: gmherek@ucdavis.edu).
ABSTRACT
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;92:371–377)
INTRODUCTION
People with AIDS (PWAs) and the social
groups to which they belong have been stigmatized worldwide
since the epidemic began.1–4 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.5–7 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.8–13 Fear of stigma has deterred
individuals from being tested for HIV and from disclosing
their seropositive status to sexual partners, family, and
friends.6,13–16
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.4,17–19 Stigmatizing attitudes
are strongly correlated with misunderstanding the mechanisms
of HIV transmission and overestimating the risks of casual
contact20–24 and with negative attitudes toward social
groups disproportionately affected by the epidemic, especially
gay men and injecting drug users.20,23–26
Early in the epidemic, concerns about
stigma led to public health policies that reflected "a
commitment to rely on prevention measures that were
noncoercive—that 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.28–31
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
METHODS
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 = 18–93), 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-digit dialing
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 =
18–89), 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 1990–1991 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
As much as possible, the items for
assessing AIDS stigma were the same as those used in the 1991
survey4 and were administered in the same sequence. The survey
protocols were not identical, however, because some new items
were added and other items were dropped in 1997 and 1999. The
present article reports response patterns for items that were
administered in at least 2 surveys (either the 1991 and 1997
surveys or the 1997 and 1999 surveys). For most items, the
exact wording is reproduced in Tables 1 through 3. (A list of
the items is also available online at http://psychology.ucdavis.edu/rainbow/html/aids.html.)
AIDS Stigma
Previous research has shown that AIDS
stigma is expressed in a variety of ways.4,5,19–24
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
Casual contact and blood Alternative Treatments.
Because one of the most consistent
correlates of AIDS stigma has been overestimation of the risk
of HIV transmission through various routes,20–24 we assessed
beliefs about the likelihood "that a person could get
AIDS or AIDS virus infection" through a kiss on the
cheek, sharing a drinking glass, using public toilets, being
coughed or sneezed on, and donating blood.
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
Because the same items were used in
multiple surveys, the data permit examination of trends in
AIDS stigma throughout the 1990s. To test for significant
changes in the point estimates over time, we conducted a
series of logistic regression analyses. For the dependent
variables, responses to each item were coded 0 or 1, with the
percentages reported in Tables 1 through 3 corresponding to
responses coded 1. To account for the unequal time gaps
between surveys (i.e., 6 years between the 1991 and 1997
surveys, 2 years between the 1997 and 1999 surveys), an
independent variable for year of the study was entered in
first step of the equation (coded 0 = 1991, 6 = 1997, 8 =
1999). When the item appeared in all 3 surveys, the quadratic
form of the independent variable was entered in a second step
to test for nonlinear trends. These analyses yielded odds
ratios that characterize changes in the odds of endorsing the
item with each passing year (with 1991 as the index year).
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.
RESULTS
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). As indicated by the significant odds ratios, the odds of a respondent's
supporting quarantine declined by approximately 15% annually
between 1991 and 1999. The odds of supporting public
identification of PWAs declined by an average of 9% annually.
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
As indicated by the significant odds
ratios, the odds of expressing negative feelings toward PWAs
declined by an average of 8% to 10% annually between 1991 and
1999. At the beginning of the decade, more than 1 respondent
in 3 expressed some fear of PWAs, and more than 1 in 4 felt
anger or disgust. By 1999, approximately one fifth of
respondents expressed fear and roughly one sixth felt anger or
disgust (Table 1, Section 2).
Responsibility and Blame
The proportion of respondents believing
that "people who got AIDS through sex or drug use have
gotten what they deserve" peaked in 1997 at 28% (Table 1,
Section 3). This represented a significant increase from 1991.
By 1999, agreement had declined, but approximately one fourth
of respondents still endorsed the statement. Somewhat smaller
proportions perceived PWAs as not caring whether they infect
other people. Framing the issue in less punitive terms, more
than half of the 1997 respondents believed that PWAs are
responsible for their illness. That proportion declined
somewhat in 1999, to 48%.
Beliefs About HIV Transmission
Virtually all survey respondents
understood that HIV can be contracted through sharing needles
for drug use and through unprotected sex with an infected
partner. Many, however, did not understand how HIV is not
transmitted. Moreover, the proportion responding incorrectly
to some of the questions about casual contact increased over
the decade.
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, Section
1). Misconceptions about other forms of casual social contact
were widespread, however. Throughout the decade, roughly half
of the respondents believed that AIDS could be contracted from
sharing a drinking glass. About one third of 1991 respondents
believed that AIDS could be contracted from a public toilet;
this proportion increased significantly—to nearly 41%—by the
end of the decade. Somewhat fewer than half of the 1991
respondents believed that AIDS could be spread through a cough
or sneeze; the proportion expressing this belief peaked at 54%
in 1997 and then declined to 50% in 1999. In addition to
incorrect beliefs about casual contact, much of the public
continues to harbor misapprehensions about donating blood.
Roughly one third of the 1991 respondents believed that HIV
can be contracted through donating blood. The proportion
dipped to 29% in 1997 but rose again to 33% in 1999.
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
How did the feelings and beliefs
described heretofore translate into intentions to avoid PWAs?
The logistic regression analyses indicated that the odds of
avoiding or stigmatizing a PWA in various hypothetical
situations declined by 8% to 10% each year. In 1991, 19% said
that they would avoid a coworker with AIDS and 15% said that
they would have their own children avoid a schoolmate with
AIDS (Table 3, Section 1). Those proportions declined
significantly, to less than 10%, by 1999. In 1991, 45% said
that they would avoid shopping at a grocery store whose owner
had AIDS. This proportion dropped significantly by the end of
the decade. Nevertheless, even in 1999, roughly 3 in 10
respondents said that they would shop elsewhere.
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, between
22% and 30% of respondents reported that they would feel
somewhat or very uncomfortable having their son or daughter go
to school with a child with AIDS, working in an office with a
PWA, or shopping at a neighborhood grocery store whose owner
had AIDS.
Section 3 of Table 3 shows the extent to
which respondents would avoid symbolic contact with PWAs. Even
though the hypothetical situations described to respondents
could not possibly result in HIV transmission, about one
fourth said that they would be less likely to wear a sweater
that had been worn once by a PWA, or would feel uncomfortable
drinking out of a clean glass in a restaurant that had been
used a few days earlier by a PWA.
Summary Index of Stigma
As a summary measure, a 9-item stigma
index was computed by counting the number of stigmatizing
responses each person gave to the items concerning negative
feelings, avoidant behavioral intentions, quarantine, public
revelation of the names of PWAs, and the belief that PWAs have
gotten what they deserve. This subset of items was selected to
correspond to a similar index constructed for the 1991
survey.4 (A 10-item index was used in the paper that
originally reported the 1991 data. Because 1 item from the 1991 index was not
administered in the later surveys, we recalculated the 1991
index using 9 items rather than 10 to compare scores on the
summary measures.) Internal consistency for the items was
acceptably high in all years ( = .77 in 1991, .79 in 1997, and
.77 in 1999). We assessed trends with ordinary least squares
regression, using the stigma index score as the dependent
variable with hierarchical entry of the same 2 independent
variables as in the logistic regression analyses reported earlier (i.e., the linear and
quadratic forms of year of survey).
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.
DISCUSSION
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
stigma—support for quarantine and public identification of
PWAs—diminished 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
1999—nearly 2 decades after the beginning of the AIDS
epidemic in the United States—one 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.
Acknowledgments
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.
Footnotes
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.
Peer Reviewed
Accepted for publication May 1, 2001.
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