Rapid Review #9: September 2009 HIV Disclosure EVIDENCE INTO ACTION Question The OHTN Rapid Response What literature exists that addresses disclosure of HIV status to children, Service offers HIV/AIDS programs family-members and intimate partners? More specifically, what does the and services in Ontario quick evidence document as factors that facilitate or inhibit disclosure; access to research evidence to challenges experienced before, during and after disclosure; and the role help inform decision making, of support systems? Additionally, have any effective disclosure models service delivery and advocacy. been developed? In response to a question from the field, the Rapid Response Team reviews the scientific and Key Take-Home Messages grey literature, consults with • Experiences of and processes to disclosure are extremely diverse and experts, and prepares a brief fact sheet summarizing the current can be impacted by ethnicity, race, gender, sexuality, age, nationality, evidence and its implications for culture and class. policy and practice. • Disclosure can have a significant impact on adherence to medical regimens, virus transmission, access to support services and reductions in mental health symptoms. • Several disclosure models have been developed relevant to particular identity groups or communities, but none that could be considered ‘universal’ • Effective support systems, the presence of a confidant and increased level of HIV awareness ease the disclosure process The Issue and Why It’s Important Suggested Citation: Disclosure of HIV positive serostatus is an ongoing process that is gaining OHTN Rapid Response Service. Rapid significant attention in HIV literature. Decisions of if, how, to whom, and when Review: HIV Disclosure. Ontario HIV Treatment Network, Toronto, ON, one will disclose are intimately personal but have a considerable effect on July,2010 families, communities, service-delivery systems and policy-making bodies. Program Leads / Editors: Effective disclosure has been linked to reductions in HIV transmission (1), adherence to medical regimens (2;3), access to support services (4), reductions Michael G. Wilson, PhD in mental health symptoms (5), and effective adaptation to living with HIV. Jean Bacon Sean B. Rourke, PhD Contact:: © Ontario HIV Treatment Network ~ 1300 Yonge Street Suite 600 Toronto Ontario M4T 1X3 ph: 416 642 6486 | toll-free: 1-877 743 6486 | fax: 416 640 4245 | www.ohtn.on.ca | [email protected] [email protected] References Alternately, ineffective disclosure can lead to strains on relationships, changes 1. Kalichman SC, Rompa D, Cage M. or loss of employment, discrimination and even violence (6;7). It is therefore Group intervention to reduce HIV vital that service providers and researchers understand the intricacies of the transmission risk behavior among process and the unique paths that individuals take to disclosure. A Toronto- persons living with HIV/AIDS. Be- havior Modification 2005 March;29 based community health centre dedicated to the needs of women of colour is (2):256-85. developing a disclosure model relevant to Black, African and Caribbean women 2. Stirratt MJ, Remien RH, Smith A, in Canada and has requested a review of the literature to document previous Copeland OQ, Dolezal C, Krieger D. The role of HIV serostatus disclo- investigations into the diverse processes of HIV disclosure. sure in antiretroviral medication adherence. AIDS and Behavior 2006;10(5):483-93. What We Found 3. Peretti-Watel P, Spire B, Pierret J, Much of the early research on disclosure addressed disclosing a child’s own HIV Lert F, Obadia Y. Management of HIV-related stigma and adherence status to the child. More recently, much is being done to understand other to HAART: Evidence from a large dimensions of disclosure and the ways people in different relationship to the representative sample of outpa- person with HIV are affected. To keep within the parameters of this Rapid tients attending French hospitals (ANRS-EN12-VESPA 2003). AIDS Review, this response addresses broad themes of disclosure across identity Care - Psychological and Socio- groups and relational networks and then focuses more specifically on three sets Medical Aspects of AIDS/HIV 2006;18(3):254-61. of literature; studies addressing disclosure to one’s children, disclosure to other 4. Abdool KQ, Meyer-Weitz A, Mboyi L, family-members and disclosure to partners and significant others. Carrara H, Mahlase G, Frohlich JA et al. The influence of AIDS stigma The research shows that experiences of the disclosure process are affected by and discrimination and social cohe- many aspects of social location including race and ethnicity (8;9), sexual identity sion on HIV testing and willingness to disclose HIV in rural KwaZulu- (10), nationality (11;12), age (5;13-15), gender (7;16;17), geographic location Natal, South Africa. Global Public (18) and culture (19;20). Membership in different identity or cultural groups is Health 2008;3(4):351-65. particularly salient to disclosure in terms of the individualist or collectivist 5. Emlet CA. A comparison of HIV stigma and disclosure patterns nature of those groups. (10) For example, an individual with a collectivist- between older and younger adults orientation will consider different ramifications when making decisions to living with HIV/AIDS. AIDS Patient disclose than an individual whose been cultured to value individual success and Care and STDs 2006;20(5):350-8. 6. Greeff M, Phetlhu R, Makoae LN, consequence while a person who maintains multiple memberships, perhaps Dlamini PS, Holzemer WL, Naidoo within a collectivist ethnoracial group and an individualist gay, lesbian, bisexual JR et al. Disclosure of HIV status: and transgender community, may feel torn by these contradicting influences. Experiences and perceptions of persons living with HIV/AIDS and Additionally, distinct disclosure processes have been uncovered in particular nurses involved in their care in communities. A Kenyan study found three disclosure patterns that appear to be Africa. Qualitative Health Research 2008;18(3):311-24. unique to Africa. (12) “These include (a) intermediaries as vehicles for 7. World Health Organization. Inte- disclosure to family, (b) indirectness as a communication strategy, and (c) grating gender into HIV/AIDS pro- church pastors as common targets for disclosure.” (12,p.586) A review of grammes in the health sector: Tool to improve responsiveness to studies with heterosexual adults living with HIV indicates that disclosure rates women's needs. Geneva, Switzer- are higher among women, young, White and Latino(a) communities than among land: WHO Press; 2009. men, older adults and African American communities. (9) Interestingly, other 8. Elford J, Ibrahim F, Bukutu C, Anderson J. Disclosure of HIV studies have shown relative stability across identity groups when it comes to status: The role of ethnicity among level of disclosure in one’s community, family and relationships. (21;22) people living with HIV in London. Journal of Acquired Immune Defi- Stigma is often correlated with disclosure as internal and perceived external ciency Syndromes 2008;47(4):514 stigma weigh heavily on the decision to disclose. “AIDS stigma and -21. 9. Arnold EM, Rice E, Flannery D, discrimination…limit access to voluntary counseling and testing, inhibit Rotheram-Borus MJ. HIV disclosure disclosure, and are, thus, barriers to care, support and prevention .” (4) A study among adults living with HIV. AIDS in Eastern China found that intention to disclose increased when felt stigma Care - Psychological and Socio- Medical Aspects of AIDS/HIV decreased. (23) A South African study consisting of 594 interviews revealed 2008;20(1):80-92. high levels of anticipated stigma in the community. (4) When asked to consider, 10. Korner H. Negotiating cultures: hypothetically, how people would respond to them disclosing a positive test, Disclosure of HIV-positive status among people from minority ethnic 86% of respondents thought the community would gossip about them, 82% communities in Sydney. Culture, anticipated being treated differently and 70% expected they would lose Health and Sexuality 2007;9 membership in social groups. Additionally, 59% thought that they would be (2):137-52. denied medical attention by the community. In the US, a qualitative 11. Pulerwitz J, Michaelis AP, Lippman SA, Chinaglia M, Diaz J. HIV-related investigation with older adults found stigma correlated to depression and higher stigma, service utilization, and levels of stigma among African American respondents when compared to White status disclosure among truck respondents. Sixty percent of the sample reported ‘protective drivers crossing the Southern bor- ders in Brazil. AIDS Care - Psycho- silence’ [nondisclosure] as a method of avoiding stigma. (14) logical and Socio-Medical Aspects of AIDS/HIV 20(7)()(pp 764-770), Some studies have drawn links between identity development and HIV 2008 Date of Publication: August disclosure, documenting steps adapting to living with HIV and their 2008 2008;(7):764-70. corresponding approach to disclosure. (9;24) One study, (24) with an 12. Miller AN, Rubin DL. Factors lead- ing to self-disclosure of a positive overrepresentation of White gay men, noted three steps in the process (the HIV diagnosis in Nairobi, Kenya: model is included in Appedix I): 1) the Diagnosis phase was associated with People living with HIV/AIDS in the disclosure only to significant people; 2) Immersion, in which one becomes Sub-Sahara. Qualitative Health