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Increasing HIV serostatus disclosure in low and middle-income countries

a systematic review of intervention evaluations

Kennedy, Caitlin E.a; Fonner, Virginia A.a; Armstrong, Kevin A.b; O’Reilly, Kevin R.b; Sweat, Michael D.b

doi: 10.1097/QAD.0000000000000671

Objective: To review the effectiveness of interventions to increase HIV serostatus disclosure in low and middle-income countries.

Design: Systematic review of peer-reviewed articles providing prepost or multiarm evaluations of disclosure interventions, defined broadly as any intervention with the goal of increasing rates of voluntary disclosure of HIV serostatus through self-disclosure or partner notification.

Methods: Articles were included if they reported postintervention evaluation results and were published between 1 January 1990 and 1 August 2014. Searching was conducted through five electronic databases, secondary searching of four journals, and hand searching reference lists of included articles. Systematic methods were used for screening and data abstraction, which was conducted in duplicate. Study quality (rigor) was assessed with eight items.

Results: Fourteen articles evaluating 13 interventions met the inclusion criteria, all from sub-Saharan Africa. Most interventions focused on people living with HIV and used cognitive-behavioral group sessions or peer/community health worker support to encourage disclosure to sexual partners, family members, or friends. One focused on maternal disclosure to HIV-uninfected children, whereas two examined voluntary partner notification interventions. Several studies had limitations due to weak designs, small sample sizes, or high attrition. Findings on disclosure were mixed, with most effect sizes being relatively small, and some more rigorous studies showing no effect. Partner notification interventions had the strongest evidence of impact.

Conclusion: The existing evidence base for interventions to increase disclosure is limited and shows variable results. Further research is needed to determine whether current approaches to increasing disclosure are effective or whether new approaches should be considered.

aDepartment of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland

bDepartment of Psychiatry and Behavioral Sciences, The Medical University of South Carolina, Charleston, South Carolina, USA.

Correspondence to Caitlin E. Kennedy, PhD, MPH, Assistant Professor, Social and Behavioral Interventions Program, Department of International Health, Room E5033, Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD 21205, USA. Tel: +1 443 287 8794; fax: +1 410 614 7553; e-mail:

Received 12 March, 2015

Revised 13 March, 2015

Accepted 13 March, 2015

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An effective global response to HIV requires people to be aware of their risk of HIV, get tested, engage in appropriate HIV care and treatment services if positive, and take appropriate steps to prevent HIV transmission or acquisition. There are many approaches to achieving these goals, but supporting individuals to disclose their HIV serostatus to others may facilitate these diverse outcomes in multiple ways. A recent meta-analysis showed that disclosure is associated with increased social support and reduced stigma [1], which may facilitate other interventions, such as engagement in care and treatment [2]. Disclosure to sexual partners could also increase rates of HIV testing and reduce transmission risk behaviors, although the evidence for this is limited and affected by multiple confounding factors [3]. However, there have also been concerns about potential negative aspects of disclosure, including stigma, violence, abandonment, and relationship dissolution [4]. Fear of HIV serostatus disclosure to partners has been among the most consistent barriers to prevention of mother-to-child transmission (PMTCT) program uptake among women in sub-Saharan Africa [5]. Indeed, many benefits of disclosure require access to services and commodities that may not be guaranteed in many low and middle-income settings. Program planners must therefore consider how best to support people to disclose their HIV status to others in order to achieve positive outcomes while avoiding potential negative consequences of disclosure.

Obermeyer et al.[6] have defined HIV serostatus disclosure as ‘the process of revealing a person's HIV status, whether positive or negative’. Disclosure is a complex process – not a single event – and involves different ways of communicating about HIV status with different people at different points in time. Self-disclosure – when a person directly shares information about his or her HIV status with another person – is the most commonly considered form of disclosure. Partner notification, also known as partner services or contact tracing, is a related concept that involves identifying the sexual or injection partners of people who test HIV-positive and informing them that they may have been exposed to HIV. Partner notification has been described as taking multiple forms, from self-disclosure by the index patient (‘patient referral’) to notification by a provider with the index patient remaining anonymous (‘provider referral’) [7]. Historically, partner notification was done with partners of index patients with sexually transmitted infections (STIs); partner notification for HIV has only more recently been considered.

Previous reviews on HIV serostatus disclosure have covered descriptive studies measuring rates, barriers, and outcomes of disclosure by different groups [4,8–12]; theoretical models of disclosure [13]; and broad overviews of multiple aspects of disclosure, including laws, policies, and sex norms [6,14]. Other reviews have examined the related, but distinct, concept of informing someone – often a child – that he or she is HIV-infected [15,16]. Despite the large body of literature on HIV serostatus disclosure, there has been little focus on interventions designed to support people as they disclose their HIV status and increase rates of disclosure. We conducted the first systematic review of the effectiveness of interventions to increase HIV serostatus disclosure, with a focus on low and middle-income countries.

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The review was conducted as part of the Evidence Project – a series of systematic reviews of behavioral interventions and aspects of HIV prevention in low and middle-income countries. We follow standard systematic review methods and reporting guidelines [17] for all reviews.

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Inclusion criteria

Disclosure interventions were defined broadly as any intervention with the goal of increasing rates of voluntary disclosure of HIV serostatus. Studies were included in the review if they met the following criteria:

  1. Presented an evaluation of an intervention that has the explicit goal of increasing rates of voluntary disclosure of HIV serostatus (either positive or negative) by participants to others. Disclosure could be to anyone – for example, sexual partners (current or past), children, family members, friends, or healthcare providers. Disclosure had to be voluntary (i.e. not involuntary or coercive), and could be either self-disclosure, facilitated disclosure (e.g. facilitated by a counselor), or disclosure by a third party without the presence of the individual, but with the individual's permission. Within this definition, we included interventions offering voluntary partner notification. We excluded studies that focused on informing a person about his or her own HIV diagnosis; this alternative definition of disclosure ‘to’ someone, rather than ‘by’ someone, has been examined elsewhere, particularly among children.
  2. Measured one of the following primary outcomes: HIV serostatus disclosure or partner/contact knowledge of potential HIV exposure (as assessed through measures such as return for HIV testing).
  3. Compared one of the primary outcomes listed above among those who received the disclosure intervention to those who did not, or compares pre/post outcomes among intervention participants.
  4. Conducted in a developing country according to the World Bank classifications of low-income, lower-middle income, or upper-middle income [18].
  5. Published in a peer-reviewed journal from 1 January 1990 to 1 August 2014.

Although disclosure is generally discussed and encouraged in counseling accompanying HIV testing, we excluded studies that evaluated only HIV testing and counseling (HTC) programs as these have been reviewed elsewhere [19–21]. The Evidence Project uses the cut-off date of 1990 across all reviews to reduce temporal bias due to the dramatic changes in HIV treatment, behaviors, and social norms that have occurred in low and middle-income countries over the past 25 years.

Studies not meeting all inclusion criteria, but presenting relevant data from qualitative studies, cost studies, modeling studies, or reviews, were included as background articles.

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Search terms

We searched five electronic databases [PubMed, PsycINFO, Sociological Abstracts, the Cumulative Index to Nursing and Allied Health literature (CINAHL), and EMBASE] for relevant articles using the search terms (HIV or AIDS) and (disclos* or notif*). We also conducted hand-searching of the table of contents of four key journals in the field of HIV: AIDS, AIDS and Behavior, AIDS Care, and AIDS Education and Prevention. Finally, we searched the reference lists of the included articles to further identify potential new citations, and continued this process iteratively until no new citations were found.

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Initial citations retrieved were screened by one trained study team member to exclude articles that were clearly not relevant to the review's goals based on title and abstract alone. The remaining citations were double-screened by two senior study team members working independently; the results were compared and differences were resolved through consensus. A final decision on inclusion of articles was based on a full-text review and, often, discussion among all co-authors. Relevant articles not meeting the inclusion criteria were retained and included as background material; background studies underwent data abstraction using a greatly simplified form.

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Data abstraction

Each article meeting the inclusion criteria underwent data abstraction using a structured form by two trained study team members working independently; the results were compared and differences were resolved through consensus. Authors were contacted as needed to provide clarification or additional information on their studies.

The following information was gathered from each included study: location, setting, and target group; years (period of study); description of the intervention; study design; sample size; age range, sex; random or nonrandom allocation of participants; length of follow-up; outcome measures; comparison groups; effect sizes; confidence intervals; significance levels; and limitations identified by authors and reviewers. Study quality (rigor) was assessed using an 8-item assessment tool developed by The Evidence Project for other systematic reviews of HIV behavioral interventions [19–28].

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Data analysis

Data were synthesized across studies and presented narratively. We did not meta-analyze due to substantial heterogeneity in study populations, settings, specific intervention approaches, and ways of measuring disclosure as an outcome.

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Our initial database search yielded 13 275 published citations; 3 additional citations were identified through other means, such as searching reference lists of relevant articles (Fig. 1). After removing duplicates, 9121 citations remained; 8827 of these were excluded in the initial screening. The remaining 294 were screened in duplicate, and 232 were excluded at this level. The full text of 62 articles was retrieved for additional review. Of these, 32 did not meet inclusion criteria and 16 were coded as background. One intervention was evaluated through both a pilot study [29] and a full evaluation [30]; both studies were included in the review as they present unique data, but we discuss them together as the same intervention. Thus, 14 studies evaluating 13 interventions ultimately met the criteria for inclusion in the review.



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Study descriptions

Table 1 presents descriptions of the 13 included interventions [29–42]. All 13 were conducted in sub-Saharan Africa: 7 in South Africa, 3 in Tanzania, and 1 each in Botswana, Cameroon, and Malawi. One study from Tanzania was published in 1999; the remaining studies were published between 2007 and 2014. All but one intervention either targeted only women or had a majority of female participants. Five interventions targeted pregnant women [32,34,35,37,41]; of these, four focused on HIV-positive pregnant women [32,35,37,41], whereas one included both positive and negative women and their partners [34]. Six interventions targeted HIV-infected adults, including newly diagnosed people living with HIV (PLHIV) [31,33], HIV-infected women [29,40], people initiating antiretroviral therapy (ART) [39], and adults living with HIV generally [36,38]. One intervention focused on HIV-infected youth [42].

Table 1

Table 1

Table 1

Table 1

Table 1

Table 1

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Study rigor

Table 2 presents an assessment of study design and rigor for each included study. There were three randomized controlled trials (RCTs) [34–36] and five additional studies that included control groups, but did not randomize participants to the intervention [32,37,39–41]. One study used a cross-sectional design to compare individuals who received the intervention to those who did not [38], whereas three studies used a before/after design just among the intervention participants [29,30,42]. Two studies evaluating partner notification interventions were considered ‘other’ study designs: one randomized index patients to different partner notification strategies [31], whereas the other let index patients choose their preferred strategy [33]; both were evaluated by assessing rates of partner return for HTC.

Table 2

Table 2

Several studies had limitations that should be considered when interpreting findings. Four studies were described as pilot studies or had relatively small sample sizes [29,40–42], although one later published an additional full evaluation of the intervention strategy. Three studies with pregnant women reported high attrition rates [32,35,37].

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Interventions and disclosure outcomes

We identified three broad intervention approaches: cognitive-behavioral, multisession support groups, home-based or peer/community health worker (CHW) outreach and support, and partner notification interventions (Table 1). Table 3 presents a summary of the disclosure measures and outcomes for each study.

Table 3

Table 3

Table 3

Table 3

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Cognitive-behavioral support groups

Seven studies examined support groups, often based on a multisession, cognitive-behavioral model. Five of these studies targeted pregnant women.

Four studies provided multisession support groups to pregnant women living with HIV [32,35,37,41]. Of these, the ‘Mamekhaya’ intervention additionally provided ‘mother mentors’ – HIV-positive mothers trained as positive role models [32], whereas the Peers Undertaking Reproductive and Sexual Health Education (‘PURSE’) study was part of a larger effort to integrate family planning into PTMCT services [41]. Although all four studies included control groups, they shared some other limitations: three had significant attrition, only one randomized women to the intervention, and only one reported that intervention and control groups had comparable rates of disclosure at baseline (Table 2). Two of the four studies found that the intervention significantly increased disclosure: a study conducted in South Africa found that, compared to control participants, intervention participants had 8.3 times the odds of disclosure to anyone [95% confidence interval (CI) 2.1–32.9] [37], while the family planning/PMTCT integration study found that 98.4% of women intervention participants had disclosed to their partners by 3 months postpartum compared to 87.5% of control group women (P = 0.04) [41]. The other two studies found no statistically significant effect on disclosure [32,35].

A fifth study enrolled pregnant women and their partners in a four-session psychosocial support group intervention in South Africa [34]. Both HIV-positive and HIV-negative women and their partners were enrolled if they had previously tested for HIV, although testing did not necessarily occur during the current pregnancy. HIV serostatus disclosure to partners did not increase over time for men or women within the experimental or control groups; unpublished data (provided by the authors) showed that when analyses were limited to only HIV-infected participants, there was similarly no change in disclosure over time within either the experimental or control groups.

The final two support group interventions did not focus on pregnant women. The first examined the impact of support groups for people initiating ART in public-sector clinics in South Africa and measured disclosure to specific family members (parents, relatives living in the household, and relatives living elsewhere) [39]. Using regression models that controlled for other factors, PLHIV who participated in support groups were found to disclose their status to more family members at each time point. Although the impact of the intervention was not different by sex, women were more likely to disclose their status than men overall. The second study, also from South Africa, was the ‘Hlanganani’ study, which developed cognitive-behavioral support groups for HIV-infected youth [42]. This pilot study found that 6 of 65 participants disclosed to a friend or family member during the course of the intervention, and the mean number of people disclosed to increased from 2 to 4.

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Home-based or peer/community health workers

The second common intervention approach was using peers or CHWs to provide individual support – including support related to disclosure – and other services to PLHIV, often through home-based services. Five interventions used these more individually-focused models.

The South African study, which examined public-sector support groups, also examined the impact of CHWs providing counseling, support, and home-based care [39], finding a significant impact of CHWs on disclosure to family members in the second study time period, but not the first. In Botswana, a small nonrandomized trial examined the impact of a buddy system on various self-care behaviors of women living with HIV [40]. Women who chose to have a buddy were more likely to disclose to more people than those who did not (intervention: 48.7%; control: 39.5%). Another South African cross-sectional study examined an integrated community/home-based care program [38]. Essentially, all participants had disclosed to someone, but the study authors reported that intervention participants were more likely to have disclosed to more than 10 people than control participants.

One intervention provided individual counseling and other support services to sexually active men and women newly diagnosed with HIV in Tanzania [36]. This RCT conducted in the 1990s was the earliest study included in the review; it was also one of the few to have intervention and control groups that were comparable at baseline on levels of disclosure. Disclosure rates at baseline were very low, and increased dramatically over the course of the study in both the intervention and control groups, though slightly more in the intervention group. There were no major differences by sex.

Finally, one intervention focused on maternal disclosure of HIV-positive status to children. The ‘Amagugu’ intervention – a six-session, family-centered intervention to assist women in disclosing their HIV status to their HIV-uninfected school-aged children – was evaluated through a pilot before/after study [29] and full before/after evaluation [30]. The pilot study with 24 women found that 11 disclosed fully using the word ‘HIV[29], whereas the full evaluation with 281 women found that 171 disclosed fully [30]; in both studies, the remaining women did not tell their children they had HIV, but did initiate conversations with their children using words like ‘virus’.

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Partner notification

While most interventions focused on voluntary disclosure through the interventions described above, two studies evaluated HIV partner notification interventions [31,33]. In Malawi, consenting individuals from STI clinics who were newly diagnosed with HIV were randomized to one of the three methods of partner notification: ‘passive referral’ (participants disclosed to partners themselves), ‘contract referral’ (participants had a set period of time to notify their partners, after which a healthcare provider contacted partners who had not reported for HTC), or ‘provider referral’ (a healthcare provider notified partners directly) [31]. Both contract and provider referrals were conducted anonymously, without revealing the name of the index client. Partners in the contract (51%) and provider (51%) referral arms were more likely to return for HTC than those in the passive referral arm (24%; P < 0.001). There were two social harms reported: one partner abandonment and a police call when a provider came to a house. The second study, conducted in Cameroon, did not randomize participants, but otherwise evaluated similar options for people newly diagnosed with HIV [33]. Of those who agreed to participate in some form of partner services, over half (59.5%) chose provider referral, and additional data provided by the authors showed that 60% (570/956) of partners in the provider referral arm and 61% (139/228) in the contract referral arm returned for HIV testing compared with 46% (146/316) in the patient (passive) referral arm. Data were not collected for those who declined participation in any partner services. While women were significantly more likely than men to report that they were afraid of being hit or hurt if their partner found out about their HIV status (7.4 vs. 3.4%; P < 0.001), no incidents of domestic violence resulting from partner services were reported. Neither partner notification intervention reported major differences in partner return rates by sex.

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We conducted the first systematic review of the effectiveness of interventions to increase HIV serostatus disclosure in low and middle-income countries, and found a limited evidence base: just 13 interventions – all from sub-Saharan Africa – met the inclusion criteria. Most interventions focused on PLHIV and used cognitive-behavioral group sessions or peer/CHW support to encourage disclosure to sexual partners, family members, or friends. However, several were pilot studies or had significant limitations in study design or retention, and follow-up times were highly variable. Results 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, though smaller, absolute differences across groups.

Although our review covered the period from 1990 to 2014, almost all of the included articles were published since 2007. This suggests an increasing appreciation of the importance of disclosure and interventions addressing it over time, and articles in this supplement are already adding further to this evidence base. In addition, disclosure rates generally seemed to be higher in more recently conducted studies included in the review, perhaps suggesting more general trends in changing HIV-related norms, reduced stigma, and increased treatment access that support increased disclosure even in the absence of specific interventions.

The different interventions covered in this review targeted different groups, including pregnant women, adolescents, PLHIV generally, and newly diagnosed PLHIV. Each of these groups likely had different motivations for disclosure, communication skills, and perception of the potential benefits and harms of disclosure. Further, different interventions focused on disclosure to different individuals, from partners to children to family members to anyone in the wider community. Several interventions reported adapting their content to these different contexts and pilot testing with further refinement [30,42]; these are likely to be critical considerations for the development of future disclosure interventions.

All but one of the interventions either focused only on women or had a majority of female participants. This likely reflects higher rates of HIV testing among women across sub-Saharan Africa, as well as the focus on pregnancy as an opportunity for HTC and follow-up services. However, most studies that examined results by sex did not report significant differences in intervention effects between men and women, though a few did find that women were generally more likely to disclose than men, and one study reported some indications that participants found it easier to disclose to women than to men [38]. These findings are supported by the broader literature which does not suggest a clear pattern in disclosure rates by sex [6]; however, there is some indication that women (particularly mothers and sisters) are more likely to be recipients of disclosure, while studies have also documented clear sex differences in the contexts of, barriers to, and outcomes of disclosure [6].

Conclusions from this review must be considered in the light of limitations of the existing evidence base. First, all studies that met the inclusion criteria were from just five countries in sub-Saharan Africa, so results cannot be generalized to other settings. Second, all but one study focused on disclosure by PLHIV, so we know little about increasing serostatus disclosure among those who tested HIV-negative. To date, disclosure by people who are HIV-negative has likely been of less interest to public health and program planners, but increased attention to pre-exposure prophylaxis (PrEP) and serosorting may change that in the future. Third, there were only a few studies for any particular population (such as pregnant women, adult PLHIV, adolescents, or parents disclosing to their children), and only a few studies for any particular intervention approach, limiting the evidence base for each approach and population group. Fourth, many of the included studies had small sample sizes, weak study designs, or significant limitations. Further, variations in study populations, settings, specific intervention approaches, and ways of measuring disclosure as an outcome meant that we were unable to combine the results from different studies in meta-analysis, which could have potentially reduced concerns about small sample size.

Our review focused on a wide range of interventions, all with a similar goal: to increase rates of HIV serostatus disclosure. Obermeyer et al.[6] have argued that structural changes, such as increasing availability of services, could facilitate disclosure, as much as individual approaches and counseling. We did not include articles that examined the effect of structural changes on disclosure if they did not have the specific goal of increasing disclosure. The articles included in this review thus focus more on strategies that engage individuals, which are generally more under the control of researchers and evaluators, rather than structural changes. While we wanted to focus on interventions that program planners could consider for their own settings, we recognized that our definition of disclosure interventions shapes the evidence base we are presenting in our review.

In sum, 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 whether current approaches to increasing disclosure are effective or whether new approaches should be considered.

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C.K., V.F., K.O., and M.S. developed the initial study design and protocol. V.F. oversaw the search and data abstraction process. C.K. analyzed the findings and wrote the first draft of the manuscript with feedback on statistical issues from K.A. All authors collaboratively discussed key decisions through the course of the review, provided critical feedback on preliminary drafts and interpretation of results, and approved the final manuscript.

We wish to thank Erica D’Aquila, Hayley Droppert, Eric Filemyr, Elise Grover, Salwan Hager, and Annisa Harsha for their screening and coding work on this review. We also thank all the study authors who responded to requests for additional information and clarification about their research. This research was supported by the US National Institute of Mental Health, grant number 1R01MH090173.

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Conflicts of interest

There are no conflicts of interest.

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disclosure; HIV; intervention studies; partner notification; systematic review

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