HEALTH POLICY AND ETHICS

HEALTH POLICY AND ETHICS

Facilitating HIV Disclosure

Facilitating HIV Disclosure Across Diverse Settings: A Review Carla Makhlouf Obermeyer, DSc, Parijat Baijal, MA, and Elisabetta Pegurri, MSc

HIV status disclosure is cen-

tral to debates about HIV be-

cause of its potential for HIV

prevention and its links to pri-

vacy and confidentiality as hu-

man-rights issues.

Our review of the HIV-dis-

closure literature found that

few people keep their status

completely secret; disclosure

tends to be iterative and to be

higher in high-income coun-

tries; gender shapes disclosure

motivations and reactions; in-

voluntary disclosure and low

levels of partner disclosure

highlight the difficulties faced

by health workers; the mean-

ing and process of disclosure

differ across settings; stigmati-

zation increases fears of disclo-

sure; and the ethical dilemmas

resulting from competing

values concerning confidenti-

ality influence the extent to

which disclosure can be facil-

itated.

Our results suggest that

structural changes, including

making more services avail-

able, could facilitate HIV dis-

closure as much as individual

approaches and counseling

do. (Am J Public Health. 2011;

101:1011–1023. doi:10.2105/

AJPH.2010.300102)

THE TOPIC OF HIV STATUS

disclosure is central to debates

about HIV, because of its links to confidentiality and privacy as hu- man-rights issues and its potential role in prevention.1 Disclosure is also considered a way to ‘‘open up’’ the HIV epidemic2 and hence is a crucial step toward ending stigma and discrimination against people living with HIV and AIDS (PLWHA). Recognizing its impor- tance, a number of researchers have reviewed the literature on disclosure by women,3 by men,4 or by parents to children.5 Others have reviewed what is known about the factors associated with disclosure, including the connec- tions among stigma, disclosure, and social support for PLWHA6; the links among disclosure, personal identity, and relationships7; and client and provider experiences with HIV partner counseling and referral.8 We sought to comple- ment existing reviews by including available information on low- and middle-income countries, which are poorly represented in all but 1 of the extant literature reviews, and by focusing on the role of health ser- vices and health care providers in HIV disclosure.

Recently, increased attention to transmission within serodiscordant couples has highlighted the po- tential role of disclosure as a way to encourage prevention.9 More- over, as countries scale up HIV

testing, counseling, and treatment, better evidence is needed to inform laws and policies, particularly re- garding how best to facilitate dis- closure while protecting medical confidentiality. Ongoing debates about mandatory disclosure to partners, health workers’ role in disclosing without patients’ consent, and the criminalization of HIV transmission raise important ques- tions about the place of disclosure in the fight against HIV and about the human-rights dimension of dis- closure policies. These debates also underscore the need for a careful review of the evidence on disclosure, an examination of in- dividual motivations and experi- ences around disclosure, an as- sessment of the role of health workers, and a better understand- ing of the societal determinants and consequences of disclosure in diverse settings.

METHODS

We conducted an electronic search of databases for journal articles and abstracts, focusing on HIV disclosure by adults living with HIV. Disclosure is defined here as the process of revealing a person’s HIV status, whether positive or negative. HIV status is usually disclosed voluntarily by the index person, but it can also be

revealed by others with or without the index person’s consent. We conducted the search in PubMed, PsychINFO, Social Sciences Cita- tion Index, and the regional data- bases of the World Health Orga- nization, including African Index Medicus, Eastern Mediterranean, Latin America, and Index Medicus for South-East Asia Region. The search used the keywords ‘‘disclo- s(ure), notif(ication)’’ and ‘‘HIV or AIDS.’’ The search retrieved a to- tal of 3463 titles published be- tween January 1997 and October 2008. After a scan of titles and abstracts, we retained 231sources, including 15 abstracts from the 2008 International AIDS Confer- ence and 11 reviews or commen- taries.

We included sources in this re- view if they were original studies or literature reviews that had appeared in peer-reviewed publi- cations and if they reported on the levels or process of disclosure (to whom, when, and how), the de- terminants of and reasons for dis- closure, and the consequences of and incidents associated with dis- closure, such as life events, risk behavior, stigma, and discrimina- tion. Articles that focused exclu- sively on children’s HIV status were excluded, but we refer to children if their parents disclosed to them. We consulted the

June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1011

regional databases of the World Health Organization to find arti- cles about resource-limited set- tings. This review also drew on related reviews of the literature on HIV testing, stigma, treatment, and prevention by Obermeyer et al.10,11

Studies published after October 2008 were not included in the tabulations, although they may be cited in the discussion.

Table 1 presents the character- istics of the studies included in this review. Of the 231 articles in- cluded, more than two thirds (157 studies) came from high-income countries, mainly the United States. Most studies in low- and middle-income countries (49 out of 76) were from sub-Saharan Africa. A total of 98 studies were conducted among heterosexual adults of both sexes, 49 specifi- cally among women, and 35

among men who have sex with men, of which 31 were conducted in the United States.

Most of these studies (134 of 231) were based on quantitative surveys, and they provide fre- quencies on different aspects of disclosure. However, a consider- able number (74 studies) used qualitative methods, including in-depth interviews and focus- group discussions, and some (11 studies) combined questionn- aires with qualitative methods, often to explore the relational context of disclosure and how individuals coped with their HIV status.

LEVELS AND PATTERNS OF DISCLOSURE

Table 2 summarizes the results of studies on levels and patterns of

disclosure in general as well as disclosure to specific categories of people, such as sexual partners, family members, and friends. Overall, a striking finding of this review was that the majority of people disclosed their HIV status to someone. The levels of reported disclosure to anyone, as shown in Table 2, ranged mostly from about two thirds to about three fourths of respondents, with a few lower rates in sub-Saharan Africa. Three studies explicitly refered to involuntary disclosure, but the rest were concerned with voluntary disclosure exist, suggesting that most people willingly disclosed their HIV status.

The frequencies summarized in Table 2 indicate that gender dif- ferences in levels and patterns of disclosure exist. Women (as mothers and sisters) were more

frequently mentioned than were men as recipients of disclo- sure. Only a few studies have in- vestigated gender differences in HIV-positive disclosure rates to partners, and the findings have been mixed. Some found no gender differences, as in Ethio- pia103,104 and Mali,105 or higher disclosure rates by HIV-positive men (84%) than HIV-positive women (78%).71 Several found higher rates by women, as in Burkina Faso and Mali,105 South Africa,73 and the United States.17

Regardless of whether there were significant gender differences in disclosure rates, most studies docu- mented substantial gender differ- ences in the contexts of, barriers to, and outcomes of disclosure.

Other differences in disclosure frequency had to do with HIV status and to whom status was

TABLE 1—Characteristics of Studies on Disclosure of HIV Status, January 1997–October 2008

Populations Sampled

Countries

Adults, Both

Genders

Heterosexual

Men Only

Men Who Have

Sex With Men

Women Only,

Including PMTCT

Injection

Drug Users

Parents’ Disclosure

to Children Total

High income

United States 41 6a 31a 22 10 23 133

United Kingdom 4 . . . 2 1 . . . . . . 7

Western Europeb 7 . . . . . . . . . 1 2 10

Australia 4 . . . . . . . . . . . . . . . 4

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