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FOR THE past decade, the US Public Health Service
guidelines have recommended that individuals infected
with the human immunodeficiency virus (HIV) notify their
sexual partners. Nondisclosure of HIV status has been
condemned as both a moral and a legal offense subject to
both civil liability and criminal prosecution.
However, practical and psychological difficulties of
disclosure exist for sexually active individuals living
with HIV. Decisions about disclosure of HIV status
involve anxiety, stigma, and shame. Divulging to sexual
partners may lead to isolation or even physical injury.
Most prevention messages on the acquired
immunodeficiency syndrome have promoted self-protection,
and condom use is recommended broadly if not universally
for sexual encounters.
Counselors emphasize the high risk of particular
practices and advise questioning of potential partners'
risk histories. Still, condoms may fail and partners may
not be truthful. Studies continue to identify
substantial sexual activity among people aware that they
are infected with HIV.
Sexual responsibility and honest disclosure by seropositive
individuals remain at the center of HIV prevention.
Studies focusing on homosexual and bisexual men have
detailed the patterns of disclosure of HIV status to
sexual partners. High proportions of homosexual men
informed their primary or steady sexual partners of
their HIV status; lower numbers informed casual
partners. Most of these studies were performed earlier
in the epidemic when fewer treatments were available and
when the stigma associated with HIV disease may have
been greater. Data regarding disclosure among infected
women and drug users are limited, and little is known
about the specific factors associated with disclosure of
HIV infection to sexual partners in more heterogeneous
samples.
To determine factors associated with disclosure of
HIV status to sexual partners, we interviewed
individuals at 2 outpatient HIV clinics seeking primary
medical care for HIV.
PATIENTS AND METHODS
Patients were enrolled from 2
sites: Boston City Hospital (BCH) HIV Diagnostic
Evaluation Unit, Boston, Mass, from February 1994 to
April 1996 and Rhode Island Hospital (RIH) HIV Clinic,
Providence, from February 1995 to April 1996. These
sites are responsible for the initial assessment and
triage of all new patients with HIV infection at their
respective institutions. Referrals come from a variety
of sources including inpatient hospital services,
hospital clinics, emergency departments, community
health centers, drug treatment programs, HIV testing
sites, prisons, and homeless outreach programs.
The subjects were patients who sought primary care
for HIV for the first time. Only patients fluent in
English, Spanish, or Haitian Creole were eligible. Each
patient provided written informed consent prior to
entering the study. This study was approved by the
institutional review boards at both sites.
Patients were asked to participate in this study
after initial clinical care was performed, including
history taking, physical examination, and laboratory
tests. At RIH this was at the initial encounter, and at
BCH this was at a subsequent appointment generally 1
week after the initial clinical visit. Patients agreed
to participate in a 60- to 90-minute standardized
interview concerning behavioral, medical, and social
history. All study instruments were translated into
Spanish and Haitian Creole and translated back into
English to check for accuracy. For non-English-speaking
patients, these instruments were used by interpreters
working with research associates. To optimize
truthfulness of patient reports, interviews were
conducted in private settings by interviewers not
involved in the patients' clinical care. Patients were
also assured that no information collected would be
reported to their patient care team or recorded in the
medical record.
Measures
The primary outcome of interest was
whether patients had told all the sexual partners they
had been with during the past 6 months that they were
positive for HIV. Patients were also asked if they had
disclosed their HIV status (hereafter referred to as
disclosure) to spouses or significant others and if they
had not, they were given a list of reasons for
nondisclosure and asked to respond to all that applied.
Independent variables examined included demographics
(age, sex, race [white, black, Latino, or other]),
birthplace (United States or other), English as a first
language, education (less than high school graduation or
high school graduate), employment, homelessness, HIV
transmission risk group (injection drug use, men who
have sex with men, or heterosexual), number of sexual
partners in the past year (1 vs >2), history
of physical or sexual violence, history of injection
drug use, alcohol abuse (>2 positive answers
on CAGE [Cut/Annoyed/Guilty/Eye] Questionnaire, a
screening test for alcohol problems),
and enrollment site. Single items regarding spousal or
significant other social support (none vs some or a lot)
and friend support (none vs some or a lot) were also
included. Frequency of condom use was assessed (all the
time vs most, half, rarely, or none of the time) and
considered an independent variable. Clinical variables
included HIV-related physical symptoms (number of
symptoms), duration of HIV diagnosis, an indicator of
current depression using the Center for Epidemiological
Studies Depression Scale (depression scored as >16), and CD4 cell count obtained within 3 months of initial
medical evaluation; when 2 counts were available we used
the mean count.
Data Analysis
The dependent variable in the
analysis is an indicator of whether patients disclosed
to all sexual partners in the last 6 months. A variety
of independent variables (described above) was selected
for potential inclusion in a model to discriminate
patients who did and did not disclose. Descriptive
statistics were generated for each independent variable;
bivariate analyses were then conducted between each
independent variable and disclosure status, using 2
independent sample t tests and chi2
analysis for continuous and discrete independent
variables, respectively. Variables that were
statistically significant (P<.05) in the
bivariate analyses or clinically relevant were entered
into a multiple logistic regression model. Meaningful
2-way interaction effects between significant
independent variables were investigated using
contingency table analyses. A 2-tailed P<.05
was considered statistically significant in bivariate
and multivariable analyses. Data were analyzed using SAS
statistical software (SAS Institute Inc, Cary, NC)
RESULTS
Two hundred seventy-six eligible
patients presented for initial primary care for HIV at
the 2 sites during the study period. Enrolled patients
represented 74% of all eligible patients presenting for
initial primary care for HIV infection from both sites
during the period of study. This represents 68% of
patients at BCH and 98% of patients at RIH. At the BCH
site, 72 patients were not enrolled in this study,
including 37 who refused to participate, 25 who agreed
to participate but never returned for the initial
interview, and 10 who were never contacted. There were
no significant differences between patients who enrolled
in the study and those who were not enrolled with
respect to age, sex, and HIV risk group category. There
was a significant difference with respect to race (P<.05):
disproportionately fewer Haitians and more whites
enrolled in the study compared with Latinos and blacks.
Of the remaining 203 patients, 129 reported having
sexual partners during the previous 6 months and these
constitute the study sample (101 at BCH and 28 at RIH).
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The study patients had the following characteristics:
black, 46%; Latino, 23%; white, 27%; men, 69%; and high
school graduates, 60%
Regarding
transmission risk group, 41% were injection drug users,
20% were homosexual or bisexual men, and 39% were
heterosexually infected. The mean age of respondents was
36 years, and 79% were enrolled at BCH. The mean CD4
cell count was 0.35×109/L (345/µL).
Sixty percent of individuals had disclosed their HIV
status to all sexual partners and 40% had not. Of those
individuals with 1 partner, 21% had not disclosed their
serostatus; 58% of those with 2 or more partners had not
informed all their partners.
In the bivariate analysis (Table 1), the following
factors were significantly associated with disclosure to
all partners at the P<.05 significance level:
female sex, white or Latino race, high spousal support,
low friend support, and lower number of sexual partners.
The other factors examined but not significantly
associated with disclosure included education,
transmission risk, injection drug use, alcohol abuse,
history of physical or sexual abuse, depression, site of
enrollment, age, symptoms, CD4 cell count or duration of
known HIV infection, and condom use. Among individuals
who did not disclose, 43% used condoms "all the
time"; the remainder used condoms less often. Among
those who disclosed, again 43% used condoms all the
time.
Among 99 individuals who had a spouse or significant
other, 12% had not disclosed their HIV status to that
person. The most common reasons listed for nondisclosure
to spouse or significant other were "too
stressful" (n=5), "partner will leave"
(n=5), "need to deal with my own emotions
first" (n=5), and "partner could not handle
it" (n=4). the odds that a person with 1 sexual partner
disclosed was 3.2 times the odds that a person with
multiple sexual partners disclosed. The odds that a
person with high spousal support disclosed was 2.8 times
the odds for those without spousal support, and the odds
that whites or Latinos disclosed was 3.1 times the odds
that blacks disclosed.
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We also investigated 2-way interaction effects
between race and the following independent variables:
education, spousal support, sex, number of sexual
partners, and history of injection drug use. In general,
blacks had lower rates of disclosure regardless of their
status with respect to the second independent variable.
The effects of education, spousal support, sex, number
of sexual partners, and history of injection drug use
were similar between blacks vs whites or Latinos and did
not support the inclusion of interaction terms in the
model
COMMENT
In our study, 40% of sexually
active HIV-positive patients new to medical care had not
disclosed their serostatus to all their sexual partners
in the prior 6 months. In addition, among those who had
not disclosed, only 42% used condoms all the time. Our
findings suggest that unknowing sexual partners of
HIV-infected persons continue to be at risk for HIV
transmission.
There are powerful forces working in favor of
nondisclosure. First, there are psychological
consequences of disclosure, especially the risk of
rejection. The reasons for nondisclosure to significant
others and spouses listed by respondents speak to the
many ways that this fear manifests. Second, there are
practical social ramifications—desired sexual
encounters may be missed, financial or sick care support
may be denied. Third, HIV-infected individuals may
rationalize that their partners need to protect
themselves; thus, it is every individual's
responsibility. Why risk the possible losses described
above? Perhaps those who do not disclose believe they
are not putting others at risk, or at very low risk,
because they are avoiding specific higher-risk practices
such as anal intercourse, or because they are regularly
using condoms. Yet arguments have been made that
partners would want to know HIV status even within the
context of safer sex.
Individuals may feel different responsibilities to
different partners. Other studies suggest that
homosexual men are far more likely to disclose to
intimate or steady partners than to casual or nonprimary
partners. Schnell et al note that 89% of
homosexual men disclosed to their "main sexual
partner," Mansergh et al found that 93% of men
disclosed to their "intimate lover," and Hays et al
noted 98% disclosed to "lover/partner." Marks et al found that 52%
of Hispanic men had kept the infection secret from 1 or
more partners. Stempel et al found that 1 year after
learning of their HIV-positive status, homosexual men in
San Francisco, Calif, had disclosed to 82% of
"lovers" and 60% of other sexual partners. We
found that people with only 1 partner were significantly
more likely to disclose to that partner than individuals
with more partners. Still, 21% of individuals in our
study who had only 1 partner did not inform them, and
12% of individuals with a spouse or significant other
did not disclose.
There are certainly risks to nondisclosure as well.
Concealment of HIV status may be stressful, and the pain
of deception and putting others at risk may feel
isolating. Nondisclosure removes people who may offer
social support, which has been noted to lessen the
effect of physical symptoms on depression. In
studies[11,15] of homosexual men, disclosure was
generally better received by partners than expected. In
another study of homosexual men, as in results
reported herein, perceived social support has been shown
to be a predictor of self-disclosure.
There are several limitations to these data. First,
we did not capture respondents' perceptions or knowledge
of the HIV status of their sexual partners, nor the
length of relationships with partners. Other work has
demonstrated that HIV-positive men are more likely to
disclose to partners who are also infected with HIV.
Second, we did not define "sexual" for
respondents, and because we did not collect data on
specific sexual behavior, we cannot define the risk of
individuals in our study transmitting HIV to their
"sexual partners." However, if "sex"
was considered penetrative by respondents, and only 42%
of our sample used condoms all the time, then risk of
transmission certainly exists despite the variability of
individual sexual practices. Third, we cannot pinpoint
when disclosure occurred; disclosure may have occurred
after unsafe sexual activity. Fourth, nondisclosure
includes 2 possibilities—nondiscussion or deception.
Our data do not allow examination of this issue. Fifth,
we relied on patient self-report. Validation of this
self-reporting is not possible, but self-report is
likely to result in underestimation of nondisclosure.
Finally, our cohort was not population based and
included only individuals who have sought medical care.
This study, sampling a heterogeneous group of
HIV-infected individuals, is consistent with previous
work describing rates of disclosure among HIV-positive
men. In this group, as in others, those with fewer
partners disclosed more often to all partners. In
addition, we found that high spousal or significant
other support was associated with disclosure. Because
this study was cross-sectional, it is impossible to
determine the direction of causality between disclosure
and spousal support. It seems more reasonable to assume
that spousal support leads to disclosure.
While there has been some concern that perhaps women
do not reveal their status to male partners because of
risk of injury, women in this study were more likely to
reveal their serostatus to sexual partners than men.
This higher likelihood of disclosure by women
underscores the need to further examine the relationship
of disclosure and victimization.
Previous studies have noted ethnic differences
in disclosure. In our study, the association between
race and disclosure persisted in multiple logistic
regression analysis that controlled for both demographic
and medical variables. Although we tested for
interaction effects, we found none. It is always
difficult to completely rule out confounding factors not
included in a study; however, our finding that blacks
had lower rates of disclosure than whites or Latinos may
stem from cultural attitudes. The acquired
immunodeficiency syndrome may be viewed with particular
shame and dishonor in the black community.
Other studies suggest that disclosure to family and
friends is correlated with length of time since HIV
diagnosis and symptoms. Yet neither of these
associations has been observed regarding disclosure to
intimate partners either in our data or in other
reports. This suggests that specific factors may
differentially influence when individuals are willing to
disclose to sexual partners compared with others.
In addition to population-based prevention efforts,
our data suggest that interventions that assist
disclosure targeted at people with HIV who do not
disclose their serostatus to sexual partners are needed.
Many state health departments will notify previous
partners for reluctant persons. However, there are clear
limits of contact tracing, including unreliable recall
of partners, unwillingness to identify partners,
confidentiality concerns, and inadequate systems for
locating identified partners. The laws that govern the
notification of third parties vary in who may make
contact, what is said, and under what conditions.
Disclosure interventions can also take place in
primary care offices and clinics as well as through
special counseling programs.
The HIV-infected individuals clearly need assistance in
informing others. Guidelines are also needed for
clinicians who wish to help HIV-infected patients
disclose their serostatus and/or protect partners
through behavior change. Clinicians should take sexual
histories that include questions regarding both current
and past sexual partners. Also, discussion can include
an appeal to self-protection, describing to
nondisclosers who are not practicing safer sex the risk
of contracting other sexually transmitted diseases, new
strains of HIV, and pregnancy. Many HIV-infected
individuals may no longer view themselves as at risk for
other infections. Individuals who disclosed in our study
were not more likely to use condoms all the time, and
the reasons for this need to be addressed openly.
Disclosure itself does not ensure reduced HIV risk
behaviors.
Disclosure is a multifaceted issue that may be
influenced by an individual's perception of the social,
psychological, and material consequences of informing
others. The HIV-infected individuals remain sexually
active long after they become aware of their infection.
In the end, disclosure requires personal responsibility.
Not only past partners but potential partners need to be
informed. This is a challenge to all relationships, but
will remain central to limiting the spread of the
acquired immunodeficiency syndrome.
From the Department of Medicine, Brown University
School of Medicine, Providence, Rhode Island (Dr Stein),
and the Department of Medicine, Boston Medical Center
and the Departments of Social and Behavioral Sciences,
Epidemiology and Biostatistics, Boston University School
of Medicine and Public Health, Boston, Mass (Drs
Freedberg, Sullivan, Hingson, and Samet and Mss Savetsky
and Levenson).
Accepted for publication June 9, 1997.
Presented at the 20th Annual Meeting of the Society
of General Internal Medicine, Washington, DC, May 1-3,
1997.
Reprints: Michael D. Stein, MD, Division of General
Internal Medicine, Rhode Island Hospital, 593 Eddy St,
Providence, RI 02903.
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Table 1. Bivariate Analysis
of Factors Associated With Disclosure
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Table 2. Results of Multiple
Regression Analysis
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