Stein MD, Freedberg KA, Sullivan LM, Savetsky J, Levenson SM, Hingson R, Samet JH. Sexual EthicsDisclosure of HIV-Positive Status to Partners. Arch Intern Med. 1998;158(3):253-257. doi:10.1001/archinte.158.3.253
To determine factors associated with disclosure of human immunodeficiency virus (HIV)–positive status to sexual partners.
We interviewed 203 consecutive patients presenting for primary care for HIV at 2 urban hospitals. One hundred twenty-nine reported having sexual partners during the previous 6 months. The primary outcome of interest was whether patients had told all the sexual partners they had been with over the past 6 months that they were HIV positive. We analyzed the relationships between sociodemographic, alcohol and drug use, social support, sexual practice, and clinical variables; and whether patients had told their partners that they were HIV positive was analyzed by using multiple logistic regression.
Study patients were black (46%), Latino (23%), white (27%), and the majority were men (69%). Regarding risk of transmission, 41% were injection drug users, 20% were homosexual or bisexual men, and 39% were heterosexually infected. Sixty percent had disclosed their HIV status to all sexual partners. Of the 40% who had not disclosed, half had not disclosed to their one and only partner. Among patients who did not disclose, 57% used condoms less than all the time. In multiple logistic regression analysis, the odds that an individual with 1 sexual partner disclosed was 3.2 times the odds that a person with multiple sexual partners disclosed. The odds that an individual with high spousal support disclosed was 2.8 times the odds of individuals without high support, and the odds that whites or Latinos disclosed was 3.1 times the odds that blacks disclosed.
Many HIV-infected individuals do not disclose their status to sexual partners. Nondisclosers are not more likely to regularly use condoms than disclosers. Sexual partners of HIV-infected persons continue to be at risk for HIV transmission.
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.1 Nondisclosure of HIV status has been condemned as both a moral and a legal offense subject to both civil liability and criminal prosecution.2 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.3 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.4- 7 Sexual responsibility and honest disclosure by seropositive individuals remain at the center of HIV prevention.3
Studies focusing on homosexual and bisexual men have detailed the patterns of disclosure of HIV status to sexual partners.8- 15 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.4
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 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.
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 problems16), 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),17 and CD4 cell count obtained within 3 months of initial medical evaluation; when 2 counts were available we used the mean count.
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 χ2 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).
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).
The study patients had the following characteristics: black, 46%; Latino, 23%; white, 27%; men, 69%; and high school graduates, 60% (Table 1). 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).
As shown in Table 2, 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.
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.
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.8 Schnell et al9 note that 89% of homosexual men disclosed to their "main sexual partner," Mansergh et al15 found that 93% of men disclosed to their "intimate lover," and Hays et al10 noted 98% disclosed to "lover/partner." Marks et al8 found that 52% of Hispanic men had kept the infection secret from 1 or more partners. Stempel et al11 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.18 In studies11,15 of homosexual men, disclosure was generally better received by partners than expected. In another study12 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 work8 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.19 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 studies13,15 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 studies10,13 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.15 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.2,20
Disclosure interventions can also take place in primary care offices and clinics as well as through special counseling programs.21 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.
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.