Effective Interventions to Increase HIV Disclosure: Rigorous Evidence – Usable Results The Strongest Evidence Available for Program Planners, Policymakers, and Other Stakeholders

This summary fact sheet presents existing evidence from rigorously evaluated interventions to prevent HIV transmission in developing countries. Results are presented here from a systematic review of studies assessing the effectiveness of interventions on HIV serostatus disclosure, published in leading scientific journals. In contrast to the many anecdotal reports of best practices, this series provides readers with the strongest evidence available in a user- friendly format. The evidence provides program planners, policy makers, and other stakeholders with information about “what works.”

An effective global response to HIV requires people to be aware of their risk of HIV, get tested, engage in HIV care and treatment services if diagnosed HIV-positive, and take appropriate steps to prevent HIV transmission or acquisition. One such productive step towards curbing HIV transmission is HIV serostatus disclosure, or the process of revealing a person’s HIV status, whether positive or negative. Disclosure is a complex process, involving different ways of communicating about HIV status with different people at different times. These include self-disclosure (i.e., a person directly sharing information about his/her HIV status with another person) and partner notification (i.e., identifying sexual or injection partners of people who test HIV-positive and informing them of their exposure to HIV). Interventions are needed to support people as they disclose their HIV status as well as increase rates of disclosure.

Effectiveness of Interventions to Increase HIV Serostatus Disclosure Kennedy et al.1 conducted the first systematic review of the effectiveness of interventions to increase HIV serostatus disclosure. Two outcomes were evaluated in these studies: voluntary HIV serostatus self-disclosure and partner/contact knowledge of potential HIV exposure (as assessed through measures such as return for HIV testing). Three broad intervention approaches were summarized in these studies:

Cognitive-Behavioral Multisession Support Groups (7 studies)2–8  Four studies provided multisession support groups to pregnant women living with HIV, of which only two found significantly increased disclosure: intervention participants in had 8.3 times the odds of disclosure, while a and prevention of mother-to-child transmission (PMTCT) integration study found a significantly higher number of women receiving the intervention disclosed to their partners by 3 months postpartum compared to the control group (98.4% vs. 87.5%). o All four studies had significant attrition. o Only one randomized women to the intervention. o Only one reported comparable disclosure rates at baseline.  In a fifth study, HIV-positive and HIV-negative women and their partners were randomized to a four-session psychosocial support group intervention in South Africa. Disclosure did not differ significantly between the study groups after receiving the intervention, even after adjusting for sex and HIV serostatus.  Two other support group interventions examined disclosure to household members and peers among first- time ART initiators and HIV-infected , respectively, in South Africa. Both studies identified increases in the number of people to whom participants disclosed following the intervention. Home-Based or Peer/Community Worker (CHW) Outreach and Support (5 studies)8–13  Public-sector support groups in South Africa, through which CHWs provided home-based counseling and support, significantly impacted disclosure to family members. Another cross-sectional assessment of an integrated community-home-based care program in South Africa found intervention participants were more likely to disclose to 10+ people compared to the control group.  A small nonrandomized trial in Botswana found that women participating in a buddy system were more likely to disclose their serostatus to more people than women who did not have a buddy (48.7% vs. 39.5%).  An RCT in testing the effectiveness of individual counseling and support to sexually active men and women found significant increases in disclosure across intervention and control groups, with no differences by sex. Both groups had similarly low levels of disclosure at baseline.  In a before/after pilot study and full before/after evaluation, Mothers participating in the ‘Amagugu’ intervention (six-session, family-centered intervention helping women disclose their HIV status to their HIV- infected, school-aged children) were more likely to disclose fully (e.g., by using the word ‘HIV’ to their children). Partner Notification (2 studies)14,15  A trial in randomizing newly diagnosed individuals to one of three referral arms for voluntary partner notification services (passive, contract, or provider referrals) found notified partners were significantly more like to report for HTC services in the contract (51%) and provider referral (51%) arms compared to partners receiving passive referrals (24%).  A nonrandomized study in reporting similar partner notification strategies reported higher rates of HTC uptake among partners receiving provider (60%) and contract referrals (61%) compared to passive referrals (46%).

How is the Effectiveness of Interventions on HIV Serostatus Disclosure Determined? For the purposes of this review, “HIV serostatus disclosure” was defined as the voluntary disclosure of HIV serostatus (either positive or negative) by participants to anyone (e.g., current or former sexual partners, children, family members, friends, healthcare providers). Disclosure could be self-disclosure, facilitated disclosure (e.g., facilitated by counselor), or disclosure by a third party without the presence of the individual but with the individual’s permission/consent. Fourteen studies were included in the review out of 9,121 potential papers identified. All studies included were from sub-Saharan Africa—South Africa (n=7), Tanzania (n=3), Botswana (n=1), Cameroon (n=1), Malawi (n=1), and (n=1)—with HIV positive adults, primarily women. Three studies were RCTs, and one study used a cross-sectional design to compare individuals who received the intervention to those who did not. Five studies included control/comparison groups but did not randomize participants to the intervention, and three studies used a before/after design among intervention participants. Two studies evaluating partner notification interventions used alternative methodologies: one randomized index patients to different partner notification strategies, while the other let index patients chose their preferred strategy.

Selection Criteria and Rigor Criteria of Studies Included in the Kennedy et al. systematic review A study had to meet five criteria to be included in the review:

1. Presented an evaluation of an intervention that has the explicit goal of increasing rates of voluntary disclosure of HIV serostatus by participants to others. 2. Measured HIV serostatus disclosure or partner/contact knowledge of potential HIV exposure. 3. Compared one of the primary outcomes above among those who received the disclosure intervention to those who did not or compared pre/post outcomes among intervention participants. 4. Conducted in a according to the World Bank classifications of low-income, lower-middle income, or upper-middle income. 5. Published in a peer-reviewed journal between January 1990 and August 2014.

Studies that did not meet these criteria were excluded.

What More Do We Need to Know about the Impact of Treatment on Sexual Risk Behavior Results from the available evidence on disclosure were mixed: when statistically significant effects were found, effect sizes were generally small, and several studies showed no intervention effects. There was no clear evidence suggesting that the effectiveness of interventions to increase disclosure varied by target population or intervention approach. One randomized study examining the effect of anonymous, voluntary partner notification found that it doubled the number of partners coming in for testing compared to self-disclosure; the strong study design likely provides the best evidence for an effective approach to increasing disclosure, with a similar intervention evaluated through a nonrandomized design also showing promising, albeit smaller, absolute differences across groups. The heterogeneity of populations included in this review demonstrated differential motivations for disclosure, reinforcing the need to adapt and customize interventions to meeting the unique disclosure needs of these groups. The proliferation of female-focused disclosure interventions included in the review likewise indicated women (including mothers and sisters) are more likely to be recipients of disclosure.

Evidence generated from this review must be appraised in light of several limitations. Studies included were from six sub-Saharan African countries, limiting their generalizability to other settings and country contexts. All but one study focused on disclosure by people living with HIV, so little remains known about disclosure of negative HIV serostatus. Additionally, few studies focused exclusively on a specific population or intervention strategies, restricting evidence for effectiveness of specific interventions for specific populations. Many of the studies included had small sample sizes, weak study designs, or other significant limitations. Lastly, variations in study populations, settings, specific intervention approaches, and methods for measuring disclosure restricted abstraction of study results for meta-analysis, which may have reduced concerns about sample sizes.

As the existing evidence base for interventions to increase disclosure in low- and middle-income countries is limited and shows variable results, further research is needed to determine where current approaches to increasing disclosure are effective or whether new approaches should be considered.

Funding Source: The National Institute of Mental Health, grant number R01MH090173, provided support for the literature synthesis and preparation of this summary.

Terminology and ART: Antiretroviral Therapy CHW: Community Health Worker Effect size: A measurement of the magnitude of change (e.g., the average point increase in a qualifying examination score from taking a test preparation course). Meta-analysis: Analytic method that gathers information from multiple studies and combines them statistically to determine whether an intervention is effective. Odds ratio: The ratio of the probability of an event occurring in one group to the probability of the same even occurring in a referent group; for example, an odds ratio of 2.0 for a promotion means that those in the treatment group were twice as likely as those in the control group to use in last casual sexual encounter. PMTCT: Prevention of mother-to-child transmission of HIV RCT: Randomized control trial

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