Abstract
The objective of this study is to synthesize the existing empirical literature and perform a systematic review and meta-analysis on the relationship between HIV disclosure and engagement in the HIV care continuum among men who have sex with men living with HIV. Twenty-three studies were included, with thirteen quantitative studies and ten qualitative studies. Meta-analytic techniques were used to compute and aggregate effect sizes (odds ratio [OR] and their confidence intervals [95%CI]) for the quantitative studies and a thematic analysis was employed for qualitative studies. Given the small number of eligible studies, meta-analysis was only conducted for the linkage to care outcome, where a positive association was observed from the pooled estimation (OR=1.51, 95%CI [1.15, 1.99]). Regarding ART initiation, retention in care, and viral suppression outcomes, most of the individual studies revealed a positive association between HIV disclosure and these outcomes. Thematic analysis from qualitative studies complemented the quantitative findings by incorporating the approaching and avoidance motivations underlying the relationship between non-HIV disclosure and the participation in HIV care continuum. The small number of available studies limits the definitive conclusions, and more research is needed to ascertain the magnitude of effect sizes.
Keywords: HIV disclosure, men who have sex with men, meta-analysis, HIV care continuum
Introduction
Despite intensive behavioral and biomedical prevention and treatment efforts, the HIV epidemic among men who have sex with men (MSM) continues to escalate worldwide in both developed and developing countries.(Beyrer et al., 2013) Recent evidence that zero transmission rate was observed among sero-discordant MSM couples when HIV positive MSM maintained undetectable viral load (Rodger et al., 2019) has highlighted the importance of MSM achieving each goal of the HIV care continuum for the public health benefits at the population level. Existing literature in the US has suggested MSM experience health disparities regarding health outcomes along HIV care continuum (e.g., lower ART coverage [50%] and suboptimal viral suppression [74%]).(L. B. Hightow-Weidman et al., 2011) HIV disclosure issues, among many other reasons hindering healthcare seeking behavior and optimal clinical outcomes, are becoming particularly concerning among this population.
HIV non-disclosure has been consistently identified as the key barrier to health seeking behavior (linkage to HIV care and uptake of ART).(Govindasamy et al., 2012; Medley et al., 2013; Sarna et al., 2014) HIV disclosure not only allows serodiscordant partners to take measures to prevent HIV transmission, including seeking HIV testing, using pre-exposure prophylaxis (Brooks et al., 2011; Cohen et al., 2011), but is also beneficial to the individuals who initiate the disclosure, including social, physical, psychological dividends (Serovich, 2001), such as social support, better access to HIV treatment and care, increased opportunities to discuss the reduction of HIV risk with partners and reduced psychological distress (Maman S; Medley A, 2004). Compared with other PLWH, MSM have additional barriers to seek HIV care and treatment services due to their homosexual identity/behavior. Several previous reviews have synthesized findings to describe the barriers, facilitators or intervention efficacy for HIV disclosure among MSM. (Obermeyer et al., 2011; Sullivan, 2005) (W. N. Cao et al., 2019; Conserve et al., 2015) However, some studies mentioned that HIV disclosure promote HIV care engagement and ART initiation, while some others yields different findings, e.g., HIV disclosure to friends/family/sex partners was not associated with engagement in HIV care.(Anderson et al., 2018; L. Hightow-Weidman et al., 2017a) Given the lack of a systematic assessment, the application of meta-analysis was particularly useful when the results of primary investigations were either inconsistent or inclusive. The key scientific inquiry leading this review is whether MSM’s HIV disclosure is associated with the treatment outcomes across the HIV care continuum. To answer this question, we identified relevant studies, followed by quantitative estimation of the effect size of HIV disclosure along certain HIV care continuum (i.e., linkage to care).
To understand the potential mechanisms of the link between HIV disclosure and HIV care outcomes, we also included qualitative studies. We conducted thematic analysis and narrative review, guided by the Model of Approach-Avoidance Motivation,(Gable & Strachman, 2008), to synthesize findings in qualitative studies. The approach-avoidance distinction is not new in analyses of motivation and behavior. Approach motivation is the energization of behavior by, or the direction of behavior toward, positive stimuli (objects, events, possibilities), whereas avoidance motivation is the energization of behavior by, or the direction of behavior away from, negative stimuli (objects, events, possibilities).(Elliot, 2006) Inherent in the approach-avoidance distinction is the concept of physical or psychological movement towards a positive stimulus (e.g., obtaining social support after HIV disclosure) or movement away from a negative stimulus (e.g., fear of stigma after HIV disclosure). Understanding the social incentives and threats of HIV disclosure among MSM is likely to be particular important to explain their health seeking behavior regarding HIV care continuum.
Methods
Search strategy and article selection
This review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline (Figure 1). We conducted a comprehensive literature search from multiple databases, including EMBASE, PubMed, PsycINFO, Social Sciences, and Web of Science databases for relevant papers published prior to October 28, 2022. The key searching terms and strategy and eligibility of included publications are described in the Supplementary methods section.
Figure 1.

Flow diagram of phases of HIV disclosure systematic review (till October 28, 2022)
Data extraction
Basic characteristic data were first extracted from eligible studies, including authors, published year, study settings, study design, population, and sampling method(s) (Tables 1&2). Then further characteristics of each study were extracted for both qualitative and quantitative studies, including outcome measure, HIV disclosure targets, HIV disclosure rates, and the results of the associations between different types of HIV disclosure and each outcome (Tables 3&4). For qualitative studies, we also extracted the theoretical framework that was used to guide the research.
Table 1.
Key characteristics of included quantitative studies (n=13)
| First Author, publish year | Years of Study | Place, country | Study design | Participants (N) | Sampling methods |
|---|---|---|---|---|---|
| 1. McFall A.M. et al. 2016 | 2012–2013 | 27 study sites (12 MSM and 15 PWID) in 26 cities across India | Baseline assessment of a cluster-randomized trial | 503 MSM among 1726 HIV-infected persons aware of their status. Inclusion criteria: Age>=18 years; Informed consent; Possession of a valid referral coupon; self-identify as male and report oral/anal sex with a man in the prior 12 months. | Respondent-driven sampling method |
| 2. Hightow-Weidman LB, et al. 2017 | 2013–2015 | North Carolina, USA | Baseline data from a randomized controlled trial | 193 young (18–30 years), HIV-positive, black MSM.Inclusion criteria:
|
Convenient sampling: flyers at local campuses and off-campus venues; advertisements and targeted messages on websites (e.g., craigslist, Grindr), word of mouth and flyers at local organizations and HIV/STI clinics. |
| 3. Anderson K, et a. 2018 | 2012 | Latin America (Central America, South America and the Caribbean) | Cross-sectional study | 2350 MSM age ≥18 years old, living in a Spanish- and Portuguese speaking country in Latin America, and HIV positive | Anonymous online, multinational sample of HIV infected MSM in Latin America, recruited from the social/sexual networking site targeting MSM in Spanish- and Portuguese-speaking countries/territories in Latin America and the Caribbean, as well as Spain and Portugal |
| 4. Wohl A.R. et al. 2011 | 2007–2008 | Los Angeles County, California, USA | Cross-sectional study | 100 Latino and 98 African American MSM from a total of 398 participants (MSM: 198; female: 200). Eligibility criteria included confirmed HIV-positive status, self-identification as African American or Latino, language proficiency in English or Spanish and age 18 years or older and has a history of sex with other men. | Participants were recruited from five HIV clinics (four public county HIV clinics and one community-based clinic), all the clinics receive federal Ryan White Care Act funding for HIV care for low-income persons. |
| 5. Elopre L. et al. 2015 | 2007–2012 | Alabama, USA | Retrospective cohort study | 307 MSM among an overall 508 HIV infected patients (did not mention specific inclusion criteria for MSM) | Patients entering HIV care at the university-based HIV clinic for the first time from 2007 to 2012, and each patient has been in care for over 12-month period |
| 6. Kuhn E, et al. 2016 | 2009–2010 | University hospitals, German | A cross-sectional study | 269 HIV positive sexually active MSM obtained regular outpatient care and were recruited from specialized outpatient clinics from two university hospitals. Inclusion criteria, apart from reported sex with men, were an HIV diagnosis more than 12 months ago, sufficient knowledge of the German language to understand the structured interviews and self-report questionnaires and the absence of an acute psychotic disorder. | Convenient sampling by posting posters and handouts in the waiting areas of the hospitals |
| 7. Daskalopoulou M., et al. 2017 | 2011–2012 | Brighton, Eastbourne, London, North Manchester, UK | A large multicentre cross-sectional study | 2240 MSM among a total of 3258 people living with HIV. (did not specify the inclusion criteria of MSM) | Participants were men and women with diagnosed HIV infection attending one of eight UK HIV outpatient clinics |
| 8. Klitzman R, et al. 2007 | 2000–2002 | San Francisco, Los Angeles, New York City and Milwaukee in the US | Baseline assessment of a RCT (Cross-sectional) | 1828 men who reported homosexual or bisexual orientation | Recruitment and screening of potential respondents were undertaken in community agencies and medical clinics serving HIV-positive clients. Brochures, posters, and project descriptions, as well as direct contact by study staff in clinical and social service agencies were used to recruit respondents. In addition, media advertisements and word of mouth were used to recruit respondents. (Johnson M.O., et al., 2003) (No OR, can not do meta, asked for the raw data) |
| 9. Tiamiyu AB, et al. 2020 | 2013–2018 | Abuja and Lagos, Nigeria | A prospective cohort study | 2737 MSM and transgender women living with HIV | Participants were MSM and transgender women with diagnosed HIV infection engaging in community-based HIV prevention and treatment programs, which was recruited with respondent-driven sampling (BDS) method |
| 10.Simon Rosser BR, et al. 2008 | 2005–2006 | Six US cities (Seattle, Washington DC, Boston, New York, Los Angeles, Houston) | Baseline survey of a clinical trial | 675 HIV-positive MSM | Participants were recruited and telephone screened for eligibility by partner AIDS service organizations (ASOs) |
| 11.Stoelb BL. 2006 | Not reported | Miami | Subjects from a parent program project which is an intervention study | 81 men (self-identified as homosexual or bisexual) living with HIV | Participants were recruited from the greater Miami area via advertisements and flyers placed around the community, as well as from local clinics and HIV/AIDS service organizations |
| 12 Wei C, et al. 2012 | 2010 | 12 countries in Asia | Cross-sectional study | 416 HIV-positive MSM | Online survey (Asian Internet MSM Se Survey) in gay-oriented website in Asia in collaboration with over 40 community partners from 12 different countries |
| 13 Zhao Y, et al., 2022 | 2020 | Two community-based organizations in two cities in China (Beijing and Wuhan) | Cross-sectional study | 257 HIV positive MSM | Participants were enrolled and screened by staff in two community-based organizations. Eligible MSM were asked to respond to consent document and sent an online survey link. |
Note: CBO=community-based organizations
Table 2.
Key characteristics of including qualitative studies (n=10)
| First Author, publish year | Years of Study | Place, country | Study design | Participants (N) | Sampling methods |
|---|---|---|---|---|---|
| 1. Liu Y, et al. 2016 | 2011 | Beijing, China | Qualitative study: focus group discussion (FDG) | 40 HIV-positive MSM aged ≥18 years, self-reported MSM, and reside in Beijing. | Peer-referral snowball recruitment strategy from a community-based gay-friendly organization |
| 2. Graham SM, et al. 2018 | 2013–2014 | Malindi, Kilifi, or Mtwapa communities, Kenya | Qualitative study, semi-structured in-depth interviews | 30 HIV positive gay, bisexual, and other men who have sex with men (18 years or older, had sex with male in the past 12 months). | Peer outreach and referrals from local GBMSM-friendly providers with purposive sampling |
| 3. Chakrapani Venkatesan, et al. 2011 | 2007 | Chennai, India | Qualitative study, six focus groups for MSM and four key-informant interviews for community leaders | 17 MSM and transgender women (male-to-female) | Purposive sampling through four CBOs in Chennai |
| 4. Bui Hao, et al. 2017 | 2015 | Hanoi, Vietnam | Qualitative study, in-depth qualitative interviews | 35 HIV positive men who have sex with men (20 receiving ART and 15 not receiving ART) | Snowball sampling based on social networks (outreach team, CBOs, HIV/AIDS network, etc) |
| 5. Wei CY, et al. 2014 | 2012 | Nanjing, China | Qualitative study, semi-structured interviews, seven focus groups | 49 men who have sex with men, including both HIV positive and HIV negative MSM | Purposive sampling, including referrals from CBOs, VCTs and peer referrals. |
| 6. Arnold E.A., et al. 2017 | 2014 | San Francisco Bay Area, USA | Qualitative in-depth interviews from a randomized controlled trial | 25 HIV positive Black men who have sex with men and women from 396 RCT sample | Purposive sampling from an existing RCT by screening the HIV positive individuals in control and intervention arm |
| 7. Hoffman M, et al., 2016 | 2011 | Salvador, Brazil | Qualitative semi-structured interviews | 25 HIV-infected men, including 16 MSM (age>=18 and confirmed HIV diagnosis) | Convenience sampling by inviting patients of previous quantitative survey to participate in an interview at the time of a scheduled medical consultations or pharmacy visit |
| 8. Lazuardi, et al., 2020 | 2015–2016 | Three Indonesian cities | Four focus group interviews with 20 HIV-positive MSM, and four in-depth interviews | 24 HIV-positive MSM (men were eligible to participate if they were 16 years of age or older, reported ever having had sex with men and were deemed able to provide informed consent.) | Participants were recruited with assistance from HIV prevention outreach workers employed by four local organizations. These workers approached potential participants during community outreach visits and virtual outreach work using social media such as WhatsApp. Recruitment also involved a snowballing technique. |
| 9, Carnes, et al. 2021 | Not reported | Atlanta, Baltimore/Washington DC, Chicago, and Los Angeles. | A single session, semi-structured, individual interview | 84 MSM living with HIV (living with HIV, 18 years of age or older, male, black and/or Latino, sex with another man in the prior six months, and spoke English or Spanish) | Recruitment occurred through passive measures, e.g., flyers. |
| 10. Nakiganda, L.J., et al., 2022 | 8 villages in rural Southwestern Uganda | Semi structured interview | 16 MSM (18 years or older) | Participants were identified and recruited through purposive and snowball sampling techniques with the assistance from peer leaders in local social networks |
Table 3.
Summaries of the outcome measure and impact of HIV disclosure (quantitative studies)
| First Author | Outcome variable(s) | HIV disclosure measure | Associations | ||
|---|---|---|---|---|---|
| Disclosure recipient4 | Responses | Rate | |||
| 1. McFall A.M. et al. 2016 | Linkage to HIV care was defined as ever visiting a doctor for management of HIV after diagnosis |
|
Among 503 MSM, 87.7% were linked to HIV care. Disclosure of HIV-positive status to at least one person (OR: 2.8; 95%CI: 2.4–6.1) is one of the significant factors affected linkage to care. | ||
| 2. Hightow-Weidman LB, et al. 2017 | 1)Engagement in care (participants were asked if they were currently enrolled in or receiving HIV care of any kind); 2) Missed HIV care appointments: (adherence to scheduled medical appointments with HIV care providers over the past 12 months was assessed by self-reported number of missed visits.); 3) ART uptake: participants were asked about current and ever ART use; 4) medication adherence/viral suppression: a VAS was used to assess medication adherence. Viral suppression was provided via self-report for those who reported having had a viral load performed in the past 6 months. |
|
|
|
Among 193 MSM:
|
| 3. Anderson K, et al. 2018 | Engagement in HIV care (currently engaging in HIV care), ART initiation, and ART adherence | Any sexual partners | “Yes”, “No” or “I have not had a sexual partner since my diagnosis” | 73.6% reporting they had disclosed, and only 6.0% reporting having no partner since receiving their HIV diagnosis |
Among 2350 MSM: 80.0% were engaged in HIV care, 71% initiated ART, and among those, 37% reported missing at least one dose in the past month. Disclosure of HIV status to a partner was associated with a greater odds of HIV care engagement (aOR = 1.63, 95% CI 1.31, 2.03) and ART initiation (aOR = 1.58, 95% CI 1.37, 1.81). |
| 4. Wohl A.R. et al. 2011 | Retention in HIV care, defined as two or more primary care visits in the 6 months before the study interview. | Social network numbers who were relatives, friends, providers, and others | Yes vs No | 85.7% (including both MSM and female) disclosed their HIV status to at least one network member. | Among the overall sample (198 MSM and 200 female), the mean number of network members to whom HIV status was disclosed was significantly higher among those who were retained in care compared to those not retained in consistent HIV care (t=3.52; p=0.0005). Among the overall sample, disclosure of HIV status to more network numbers (OR=1.5, 95%CI: 1.1–1.9) is one of the predictors of retention in care. Among MSM subgroup (n=198), 73.2% (145/198) were retained in care; 160 disclosed HIV status to social networkers, with 78/100 Latino MSM and 82/98 African American MSM. The number of network members to whom HIV status was disclosed was not associated with retention in care for both Latino MSM and African American MSM. No aOR was reported, so could not be included in the meta-analysis. |
| 5. Elopre L. et al. 2015 | Retention in HIV care, defined as a gap in care >180 days during the 12 months following initial entry into HIV care. |
5-level disclosure:
|
3-level disclosure:
|
|
2 30.9% (508/1645) eligible patients-initiated HIV care for the first time. Nondisclosure was twice as likely to have poor retention in care (AOR: 2.1; 95%CI: 1.1, 4.1) compared to persons who reported broad disclosure. Comparing to broad disclosure, disclosure to spouse/partners/significant other (AOR: 0.6, 95%CI: 0.3, 1.6); family only (AOR: 1.2, 95%CI: 0.6, 2.2); and friends only (AOR: 0.9, 95%CI: 0.5, 1.6) were all not significantly associated with poor retention in care; but the relationship between nondisclosure and poor retention in care remained (AOR: 2.2; 95%CI: 1.2, 4.3). |
| 6. Kuhn E, et al. 2016 | Viral load strategy (VLS), which rates HIV-positive patients unlikely to transmit HIV by unprotected sexual intercourse if viral load under effective ART | Serounknown sex partners | Yes vs. No |
|
68% (185/269) were having undetectable viral load under ART. Participants who are using VLS were less likely to reveal their HIV status to sex partners (p=0.023). Regarding the serocommunication on anonymous settings, 66.7% participants using VLS vs 28.3% of the reference group reported principally conceal their HIV status to anonymous sex partners (P=0.051). |
| 7. Daskalopoulou M, et al. 2017 | Viral load non-suppression was defined as clinic-recorded VL>50 copies/ml among those who had started ART at least 6 months prior to VL measure |
|
|
|
3 86.6% of participants had suppressed viral load. MSM were more likely to disclose to some/all friends compared to family (85.8% vs 59.9%). There was no evidence that non-disclosure overall (versus disclosure to anyone) was associated with ART non-adherence or VL non-suppression (PR: 1.5, 95%CI: 0.8, 2.7) among MSM; disclosure to friends and family was also not associated with viral suppression (none vs some: PR: 1.0, 95%CI: 0.6, 1.7; most or all vs. none: PR: 1.3, 95%CI: 0.9, 2.0); |
| 8. Klitzman R, et al. 2007 | Being on ART and undetectable viral load were mentioned, but not as main outcomes, also no specific definition. |
|
Yes/No |
|
76.7% were on HAART and 59% reported an undetectable viral load. Being on HAART, viral load and number of symptoms were not associated with disclosure. (No ORs were reported) |
| 9. Tiamiyu AB, et al. 2020 | Being prescribed ART and Viral load <50 copies/ml |
|
|
|
Compared to those who had not disclosed their HIV status to MSP, participants who had disclosed were more likely to be prescribed ART (58.8% vs 40.0%, p<0.001) and to have viral load <50 copies/ml (47.7% vs 24.7%, p<0.001). Participants who had disclosed their status to FSP were more likely to be prescribed ART (61.8% vs 43.1%, p=0.013). There were no statistically significant differences between participants who had and had not disclosed their HIV status to FSP in terms of viral suppression (32.4% vs 29.3%, p=0.350). After adjusting for other factors, HIV status disclosure to MSP was more likely among participants who were virally suppressed (RR: 1.67, 95%CI: 1.24–2.25; p<0.001). HIV status disclosure to FSP was more likely among participants who were prescribed ART (RR:2.27, 95%CI: 1.07–4.83; p=0.033) |
| 10.Simon Rosser BR, et al. 2008 | Viral load | Secondary sexual partner(s) regardless of the partner’s HIV status |
|
30% reported disclosing to none; 31% to some; 39% to all. | Greater disclosure was associated with detectable viral load (Adjusted OR: 1.85; 95%CI: 1.21, 2.85) |
| 11.Stoelb BL. 2006 | CD4 counts, viral load | Immediate social network, defined as a participant’s spouse/partner, child/children, mother, father, siblings, and close friends | Total number of individuals to whom one has disclosed, Yes/No | 2.5% not having had disclosed to anyone; 25.9% disclosed to 100% of their immediate social network | The quadratic relationship between percent of serostatus disclosure was not significantly related to viral load (β=−.53, F change=1.42; p=0.24). Regression analyses revealed that neither the linear nor the quadratic relationships between the number of network members told and the viral load were statistically significant. (No ORs were reported) |
| 12. Wei C, et al. 2010 | Viral load (Undetectable, detectable, Don’t know/unsure) | Sexual partners |
|
Prevalence of non-disclosure: 88.1% in China, 74.4% in Japan, 69.4% in Singapore, 66.7% in Taiwan and Thailand, 60.0% in Indonesia, 58.7% in Malaysia, 56.8% in Hong Kong, 47.1% in Philippines | In multivariable analysis, HIV disclosure was not associated with detectable viral load (AOR: 0.99, 95%CI: 0.51, 1.93). |
| 13. Zhao Y, et al., 2022 | Timely linkage to care, defined as the duration of the time from participants’ HIV diagnosis date to their first date of accessing the hospital to initiate ART less than one month | Sexual partner |
|
19.84% chose “Yes”, 80.16% chose “No” | Disclosure of HIV status to the sexual partner were positively related to timely linkage to care (β = 0.22, SE = 0.08) (No ORs were reported) |
This proportion based on both MSM and PWID who already disclosed their HIV status. The OR value for this study is from the pooled sample of both MSM and drug users.
The associations were analyzed based on the overall sample (including 307 MSM, 109 men who have sex with women and 92 female who had sex with men), rather than only MSM.
The percentage was analyzed based on the overall sample (including 2240 MSM, 367 heterosexual men and 626 women).
All the studies did not report HIV disclosure process (e.g., active or passive disclosure) except the dissertation conducted by Stoelb BL. However, HIV disclosure process information were not included in the quantitative analysis in this study.
Table 4.
Summaries of the outcome measure and impact of HIV disclosure (qualitative studies)
| First Author | Outcome variable(s) | HIV disclosure measure | Associations | ||
|---|---|---|---|---|---|
| Disclosure recipient1 | Response | Theoretical framework | |||
| 1. Liu Y, et al. 2016 | The barriers to and facilitators of linkage to and engagement in HIV care | Potential embarrassment of meeting non-gay acquaintance, such as colleagues, friends, and family members in the hospital and the concern that their records of seeking HIV care and their records of seeking HIV care and their gay identity would be documented and reported to the government or linked to future healthcare plans, influenced decisions to avoid the available HIV care services. | N/A | None | Fear of disclosing one’s HIV and homosexuality status in the hospital setting was one of the major barriers of linkage to/engagement in HIV care. |
| 2. Graham SM, et al. 2018 | Barriers to and facilitators of HIV care engagement and ART adherence | Family members (e.g., sister) and friends last year | Provide valuable social support | Access-Information, Motivation, and Behavioral Skills (IBM) model | Disclosure of HIV status is one of the behavioral skills in the conceptual model of HIV care engagement (i.e., entry in care, ART initiation, ART adherence, retention in care). |
| 3. Chakrapani Venkatesan, et al. 2011 | Barriers to ART access (no specific definition) | Family members | N/A | Multilevel framework analysis (family/social level, healthcare system level, individual level) | Lack of HIV disclosure to family members precludes family support to initiate ART. MSM who disclosed their HIV status were motivated to take ART in order to support their families. Some MSM declined follow-up or treatment because of fear of HIV disclosure and subsequent serious adverse consequences if their HIV-positive status were revealed to others. Strong motivations to keep one’s HIV-positive status and same-sex attraction secret were interconnected with sexual prejudice against MSM and transgender. Consequences of disclosure, including rejection by family, eviction from home, social isolation, loss of subsistence income, and maltreatment within the healthcare system, presented powerful disincentives to accessing ART. |
| 4. Bui H, et al. 2017 | Barriers to access and uptake of ART |
|
|
Multi-level factors: individual barriers, societal barriers, and health system barriers | Not comfortable to disclose HIV status to police resulting in discontinued ART during incarceration. Fear of being stigmatized or discriminated against after HIV disclosure limited their opportunities to connect with HIV testing and care services. |
| 6. Wei CY, et al. 2014 | Barriers and facilitators to HIV testing and treatment |
|
1. Would only disclose HIV status to a few people, such as partners and close friends; 2. Would not disclose to parents or family members because it will bring shame to the family | Ecological model and Health Belief Model to guide the interview | HIV non-disclosure to families was one of the interpersonal barriers to ART treatment. |
| 8. Hoffman M, et al., 2016 | Access to HIV diagnosis, linkage to care, retention in care, ARV provision, or continued treatment to achieve viral suppression (no specific definition). | Did not specify the target, just a general disclosure | N/A | None | All MSM feared the disclosure of HIV and reported common experiences with HIV-related stigma, discrimination, violence, and homophobia. Fear of disclosure limited access to all care stages. Quote: “I saw someone I knew, and I left. I didn’t want to pick up the [test] result.” |
| 9.Lazuadi E, et al., 2020 | Treatment uptake | Disclose to family members, sexual partners, and friends |
|
Socio-ecological model | Fears relating to unwanted disclosure of HIV status also inhibited and impeded treatment initiation. This fear of disclosing HIV status was magnified by concerns about having to tell other people about their sexual practices. |
| 10. Carnes, et al. 2020 | Engagement in medical care (engaged, delayed, inconsistent, and detached) | Disclosure to any person |
|
Social network resources assist PLWH with care engagement | The findings suggest that disclosure did not uniformly facilitate or impede linking to or sustaining engagement in care. It observed no patterns. Disclosure and social support’s role in improving care is complex. |
| 11. Nakiganda, L.J., et al., 2022 | Engagement with HIV care and treatment services | Disclosure to health care providers | Repeated disclosures were required due to high staff turnover | Socio-ecological model | Fears relating to the risk of disclosure of HIV status spreading from health services to communities undermined uptake of treatment services. |
All the studies did not report HIV disclosure process.
The methodological quality assessment among quantitative and qualitative studies was conducted using the National Institutes of Health (NIH) Quality Assessment Tool for Observational Cohort and Cross-sectional Studies (National Heart, 2013) (Table 5) and the checklist adapted from Standards for Reporting Qualitative Research (SRQR).(Downs & Black, 1998; O’Brien et al., 2014) (Table 6).
Table 5.
Quality assessment tool for observational cohort and cross-sectional studies
| First Author (ref) | (1) | (2) | (3) | (4) | (5) | (6) | (7) | (8) | (9) | (10) | (11) | (12) | (13) | (14) | Total score | Quality rating |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Hightow-Weidman et al. (2017) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 7 | Fair |
| Anderson et al. (2018) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 7 | Fair |
| Daskalopoulou et al. (2018) | 1 | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 8 | Good |
| Elopre et al. (2015) | 1 | 1 | 0 | 1 | 0 | 1 | 1 | 1 | 1 | 0 | 1 | NA | NA | 1 | 9 | Good |
| Klitzman et al. (2007) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | NA | NA | 1 | 5 | Fair |
| McFall et al. (2016) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 1 | NA | NA | 1 | 5 | Fair |
| Kuhn et al. (2016) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 1 | NA | NA | 0 | 4 | Fair |
| Wohl et al. (2011) | 1 | 1 | 1 | 1 | 1 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 9 | Good |
| Tiamiyu AB et al. (2020) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 7 | Fair |
| Simon Rosser et al. (2008) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 7 | Fair |
| Stoelb BL. (2006) | 1 | 1 | 0 | 1 | 1 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 8 | Good |
| Wei C, et al. (2010) | 1 | 1 | 0 | 1 | 0 | 0 | 0 | 1 | 1 | 0 | 1 | NA | NA | 1 | 7 | Fair |
| Zhao Y, et al. (2022) | 1 | 1 | 1 | 1 | 1 | 0 | 0 | 0 | 1 | 0 | 1 | NA | NA | 0 | 7 | Fair |
Note: 1=Yes, 0=No, NA=not applicable
Quality rating: Based on the total score on 14 topics (ranging from 0 to 13), each included study was rated as poor (total score from 0 to 3), fair (total score from 4 to 7), or good (total score 8 or higher)
(1) Was the research question or objective in this paper clearly stated?
(2) Was the study population clearly specified and defined?
(3) Was the participation rate of eligible persons at least 50%?
(4) Were all the subjects selected or recruited from the same or similar populations (including the same time period)? Were inclusion and exclusion criteria for being in the study prespecified and applied uniformly to all participants?
(5) Was a sample size justification, power description, or variance and effect estimates provided?
(6) For the analyses in this paper, were the exposure(s) of interest measured prior to the outcome(s) being measured?
(7) Was the timeframe sufficient so that one could reasonably expect to see an association between exposure and outcome if it existed?
(8) For exposures that can vary in amount or level, did the study examine different levels of the exposure as related to the outcome (e.g., categories of exposure, or exposure measured as continuous variable)?
(9) Were the exposure measures (independent variables) clearly defined, valid, reliable, and implemented consistently across all study participants?
(10) Was the exposure(s) assessed more than once over time?
(11) Were the outcome measures (dependent variables) clearly defined, valid, reliable, and implemented consistently across all study participants?
(12) Were the outcome assessors blinded to the exposure status of participants?
(13) Was loss to follow-up after baseline 20% or less?
(14) Were key potential confounding variables measured and adjusted statistically for their impact on the relationship between exposure(s) and outcome(s)?
Table 6.
Quality assessment of qualitative studies
| First Author | Date | (1) | (2) | (3) | (4) | (5) | (6) | (7) | (8) | Total (Out of a Possible 8)* |
|---|---|---|---|---|---|---|---|---|---|---|
| Chakrapani et al | 2011 | 1 | 1 | 0 | 1 | 1 | 0 | 1 | 1 | 6/8 |
| Culbert | 2014 | 1 | 1 | 0 | 1 | 1 | 0 | 0 | 1 | 5/8 |
| Wei et al | 2014 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 8/8 |
| Hoffmann et al | 2016 | 1 | 0 | 0 | 1 | 0 | 1 | 0 | 1 | 4/8 |
| Liu et al | 2016 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 6/8 |
| Arnold, et al | 2017 | 1 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 7/8 |
| Bui et al | 2017 | 1 | 0 | 0 | 1 | 1 | 1 | 1 | 1 | 6/8 |
| Graham et al | 2018 | 1 | 1 | 0 | 1 | 1 | 1 | 1 | 1 | 7/8 |
| Lazuardi et al | 2020 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 8/8 |
| Carnes, et al. | 2020 | 1 | 0 | 0 | 0 | 1 | 1 | 1 | 1 | 5/8 |
| Nakiganda, L.J., et al | 2022 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 8/8 |
Note:
(1) Was the purpose or research question in this paper clearly stated?
(2) Was the qualitative approach and research paradigm stated in this paper?
(3) Was the interviewer’s characteristics and reflexivity (e.g., personal attributes, qualifications/experience) described in this paper?
(4) Was the sampling strategy (how and why research participants were selected, criteria for necessary sampling) clearly described in this paper?
(5) Was the data collection method (e.g., data collection procedure, description of instruments for data collection) clearly described?
(6) Was the data analysis approach (e.g., data processing, data coding) clearly described?
(7) Does the paper describe the use of a technique to enhance trustworthiness?
(8) Does the paper discuss how findings relate to other work?
To quantify the quality level, we calculated the score with the Result multiplied by 3, resulting in a range of (0–3). The cutoff of different quality level are: Low quality: (0–1); Fair quality: (1–2); Good quality: (2–3).
Statistical analysis
For quantitative studies, meta-analytic procedures were performed for HIV disclosure status (stratified by different disclosure targets) and individual stage along the HIV care continuum (i.e., linkage to care, ART initiation, retention in care, viral suppression). In this study, we selected HIV disclosure to sexual partners as the exposure in the meta-analysis because it is consistent with other studies and also the number of eligible studies meet the lowest requirement (k ≥ 4 studies) recommended by Fu et al. to synthesize effect sizes.(Fu et al., 2011) When we stratify the association of HIV disclosure on different HIV care continuum outcomes, the meta-analytic procedures could not be performed for three HIV care continuum outcomes (i.e., ART initiation, retention in care, and viral suppression) due to the small number of eligible studies. Therefore, only the meta-analysis of the association of HIV disclosure on linkage to care was conducted.
We employed DerSimonian-Laird random-effects model to weight and pool the individual estimates,(H. L. Borenstein M, Rothstein H, 2007) as most of the included studies were conducted among different populations across heterogeneous settings. A pooled estimate of AORs, together with the corresponding 95% confidence intervals (95%CIs), was calculated.
Heterogeneity among studies was estimated by Cochran Q Score (reported as I2 and representing the percent value of the heterogeneity) with corresponding p values. (H. L. Borenstein M, Higgins J, Rothstein H, 2009) We performed meta-analysis using OpenMeta[Analyst] developed by Brown University.(OpenMetaAnalyst: Wallace, 2012) For qualitative studies, we employed a thematic analysis guided by the Model of Approach-Avoidance Motivation,(Gable & Strachman, 2008) to synthesize data to identify the pre-defined common themes and emerging themes in findings, and a narrative review of qualitative studies was presented. The narrative will also provide interpretation of the relationships and complement the findings in the meta-analysis.
Results
Study characteristics
The systematic literature search yielded a total of 23 eligible studies (13 quantitative studies and 10 qualitative studies) (Figure 1). Detailed study characteristics (i.e., authors, publication year, study design) are reported in Table 1 and Table 2. The majority of quantitative studies employed cross-sectional studies, although five studies were based on baseline assessment data of RCTs and two studies employed a retrospective/prospective cohort study design across several years.
Given that MSM is a hard-to-reach population, various sampling strategies were used in the included studies, including purposive sampling (e.g., peer referral, community outreach), convenience sampling, respondent-driven sampling (RDS), and snowball sampling,(Bui et al., 2017; Liu et al., 2016). Regarding the study settings, most of them were conducted in the USA (8) or Asian countries (7).
Pooled estimate of HIV disclosure on individual stage of HIV care continuum
Linkage to care
All 4 quantitative studies that investigated the relationship between HIV disclosure and linkage to care provided data quantifying their cross-sectional associations.(Anderson et al., 2018; L. Hightow-Weidman et al., 2017a; McFall et al., 2016b; Zhao et al., 2022) Figure 2 displays a forest plot illustrating the association between HIV disclosure and linkage to care using 4 effect sizes from 4 studies. Overall, a positive association was found between HIV disclosure and linkage to care (OR=1.51, 95%CI [1.15, 1.99]). The Cochran Q test was significant (I2=58.23%, p=0.066), suggesting no significant heterogeneity.
Figure 2.

Forest plot presenting pooled estimate of the associations of different HIV disclosure to linkage to care
ART uptake
Among the 4 quantitative studies that investigated the association of HIV disclosure on ART uptake, 3 of them provided data quantifying the associations between HIV disclosure status and ART uptake (Anderson et al., 2018; L. Hightow-Weidman et al., 2017b; Tiamiyu et al., 2020). Two of them observed a statistically significant and positive association between HIV disclosure to sexual partners and ART uptake (OR range 1.58–2.27), while one did not find such a relationship regardless of different disclosure targets.(L. Hightow-Weidman et al., 2017b)
Retention in care
Among the 3 studies which quantified the association between HIV disclosure and retention in care, only two of them reported ORs.(Elopre et al., 2015a; L. Hightow-Weidman et al., 2017a) In the only study with adjusted effect size, HIV patients with a broad HIV disclosure were twice more likely to be retained in care compared with patients reporting non-disclosure of HIV status.(Elopre et al., 2015b), while the other one did not find such a relationship despite of different disclosure targets.(L. Hightow-Weidman et al., 2017b)
Viral suppression
Among the 8 studies that quantified the association of HIV disclosure on viral suppression, 5 provided odds ratios and the remaining studies did not provide parameters to conduct effect size transformation (Daskalopoulou et al., 2020; L. Hightow-Weidman et al., 2017b; Klitzman et al., 2007; Kuhn et al., 2016; Simon Rosser et al., 2008; Stoelb, 2007; Tiamiyu et al., 2020; C. Wei et al., 2012). Among the 5 studies, only one study examined viral suppression as the outcome with HIV disclosure as the independent variables.(L. Hightow-Weidman et al., 2017b) In this study, disclosure to sex partners was associated with viral suppression (POR: 6.0; 95%CI: 1.6, 22.4).
Thematic analysis of qualitative studies
In general, 7 of the 10 included qualitative studies employed a conceptual framework to guide the research, including Access-Information, Motivation, and Behavioral Skills (IBM) model (Graham et al., 2018), multilevel framework analysis (family/social level, healthcare system level, individual level)(Bui et al., 2017; Chakrapania et al., 2011), theoretical and methodological traditions of ethnography(Culbert, 2014), support network theory (Carnes et al., 2020), the ecological model, and the Health Belief Model.(Lazuardi et al., 2020; Nakiganda et al., 2022; C. Y. Wei et al., 2014) (Table 4) The common themes that emerged from the findings of these qualitative studies are shown below.
Approach motivations: benefits of HIV disclosure promote ART initiation and retention in care
HIV patients with approach motivations might focus on obtaining positive outcomes, such as strengthening an important relationship, being honest, or obtaining social support. Some studies demonstrated that HIV disclosure has motivated MSM to take ART through the social support obtained from family members or friends after disclosure.(Graham et al., 2018) (Arnold et al., 2017) Findings from another study suggests that HIV disclosure and social support did not uniformly facilitate or impede linking to or sustaining engagement in care - no patterns were observed.(Carnes et al., 2020) From the patients’ perspective, MSM who disclosed their HIV status were motivated to take ART in order to support their families.(Chakrapania et al., 2011) In a special scenario of MSM living with HIV in the prisons or incarcerated, the HIV disclosure may play a more critical role in ART initiation as it is a necessary first step to access ART as suggested in two studies.(Bui et al., 2017; Culbert, 2014) (Table 4)
Avoidance motivation 1: fear of sexual identity disclosure as an avoidance goal to hinder health seeking behavior
HIV patients with avoidance goals might focus on avoiding negative outcomes, such as the disclosure of sexual identity. Fear of sexual identity status because of HIV disclosure was reported as one of the major barriers for linkage in care(Liu et al., 2016) and access to ART.(Chakrapania et al., 2011; Lazuardi et al., 2020) In Chakrapani et al. study, it was reported that strong motivations to keep one’s HIV-positive status and same-sex attraction secret were interconnected with sexual prejudice against MSM and transgenders. In the Lazuadi E et al. study, the fear of disclosing HIV status was magnified by concerns about having to tell other people about their sexual practices (Table 4). In Nakiganda LJ et al study, the fears of unwanted disclosure, repeated disclose to health workers due to high staff turnover, and the risk of disclosure of sexuality and HIV status spreading from healthcare settings to communities undermined the uptake of treatment services.(Nakiganda et al., 2022)
Avoidance motivation 2: avoiding being stigmatized or isolated after HIV disclosure
As another avoidance goal, some studies also highlighted negative stigma experiences and anticipation/fear of these experiences related to HIV disclosure. In the Bui et al. study, fear of being stigmatized or discriminated against after HIV disclosure limited their opportunities to connect with HIV testing and care services.(Bui et al., 2017) In Hoffman et al. study, MSM feared the disclosure of HIV and reported common experiences with HIV-related stigma, discrimination, violence, and homophobia. Fear of disclosure limited access to all care stages. In the Chakrapania et al. study, consequences of disclosure, including rejection by family, eviction from home, social isolation, loss of subsistence income, and maltreatment within the healthcare system, presented powerful disincentives to accessing ART.(Chakrapania et al., 2011) (Table 4)
Discussion
To the best of our knowledge, this is the first systematic review and meta-analysis investigating the association between HIV disclosure status and the implementation of individual stage along HIV care continuum among MSM living with HIV. Due to the small number of available studies, we were only able to calculate the pooled effect size of HIV disclosure on linkage to care and random-effects model analysis suggested a significant association between the two variables from the pooled estimation. The synthesized effect size of HIV disclosure on the other three outcomes (i.e., ART uptake, retention in care, viral suppression) was not calculated due to the small number of eligible studies although most of the individual studies demonstrated a positive association of HIV disclosure on these outcomes. The small number of available studies limits the definitive conclusions, and more research is needed to calculate the pooled effect size and ascertain the magnitude of effect sizes.
Our meta-analysis demonstrated the significant pooled effect of HIV disclosure on linkage to care, which is the first step of HIV care continuum. Judging from the results from the qualitative studies, the effect of disclosure in the care stage may depend on various other factors such as patients’ relationship with their family and whether they can receive social support related to their care following disclosure. Thus, social support could potentially be a mediator between HIV disclosure and care outcomes. It is plausible that disclosure to a friend, sexual partners, or family members could facilitate the linkage to care process through the psychological relief, social well-being improvement and social support obtained from these people, which has been suggested in other studies.(W. Cao, 2017) Without the fear of disclosure of their HIV status in their communities and confidant, participants are more likely to seek treatment services. Intensive counseling and support to address and facilitate disclosure of HIV status and manage fears related to loss of confidentiality are needed. Simplifying registration procedures and reducing the need for multiple visits are important. In sum, there is still a dearth of empirical data regarding the association of HIV disclosure on HIV care cascade among this highly stigmatized population of MSM. More research is needed to ascertain the magnitude of effect sizes.
Limitations of the current review
Several limitations are worth to note. First, we were not able to perform meta-analysis for ART initiation, retention in care, and viral suppression due to small number of eligible studies with applicable outcomes, which prohibits us from calculating a pooled estimation. Second, some included studies were conducted among a mixed sample of MSM and other populations (e.g., bisexual or transgender women), which might induce biased findings. However, certain studies did a separate analysis among MSM sample although they have an overall mixed target population.(Daskalopoulou et al., 2020; McFall et al., 2016a) Therefore, we believe that the bias might not be substantial. Third, we did not include grey literature (e.g., conference abstract, non-English publications) in the primary analysis because of the accessibility concerns. However, we searched the conference abstracts and included them in the review as a sensitivity analysis, which yielded similar results as the primary search (Supplementary Figure S1). Fourth, the evidence collected from existing studies is merely correlational, and the small number of available studies and a lack of longitudinal studies make any speculation about causality conjectural. For example, it is plausible that one individual’s viral suppression status increased the possibility of the HIV disclosure behavior. Fifth, the large variability in both HIV disclosure (with different confidant types) and outcome measures (i.e., linkage to care, retention in care) across the included studies makes it difficult to compare effect sizes and to draw definitive conclusions from this modest body of research. Sixth, only a relatively small number of studies with a limited range of HIV disclosure related correlates were examined in this review. Hence, it is hard to quantify the extent to which HIV disclosure is related to other psychological and behavioral factors that might mitigate or moderate the association of HIV disclosure on individual stage of HIV care continuum.
Conclusion
The meta-analysis found a significant association between HIV disclosure and one engagement in HIV care continuum (i.e., linkage to care). However, the majority of the included studies reported a positive association between HIV disclosure and these outcomes. Thematic analysis from qualitative studies complemented the findings by incorporating both approach (obtaining social support) and avoidance motivation factors (e.g., avoid sexual identity disclosure and stigma) attached to the relationship between non-HIV disclosure and the HIV care continuum. These results, while limited due to the small number of available studies, are informative for developing mental health and coping interventions among MSM living with HIV. Understanding the distinct association of HIV disclosure on individual stage of the HIV care continuum and addressing them through tailored approaches are critical for long term success in treatment and care for MSM living with HIV.
Supplementary Material
Funding:
This work is supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina (ASPIRE I, Track II B Grant # 11540-19-50627), and National Institutes of Health (NIH/NIAID: R21AI122919 and NIH/NICHD: R01HD074221). Work by SS was supported by National Institute of Health (K23AT011173). Work by MJB was supported by the National Institute of Mental Health (K01MH115794).
Footnotes
Conflicts of interest: Authors declare no conflicts of interest.
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