Disclosure and peer support in prevention of mother-to-child transmission of human immunodeficiency virus: Evidence from Rwanda

Abstract

This retrospective cohort study from Rwanda demonstrated the likelihood of maternal disclosure and peer support in preventing mother-to-child human immunodeficiency virus (HIV) transmission. High sustained maternal viral load suppression (91.0%) and exceptional infant testing uptake (100% at 6 weeks) correlated with a low 0.7% infant HIV incidence. To eliminate mother-to-child transmission of HIV, effective strategies must engage male partners in disclosure, reduce stigma, improve health literacy, and provide structural peer-support for enhancing adherence and mental health.

Key Words: Prevention of mother-to-child transmission; Disclosure (human immunodeficiency virus status); Peer support; Human immunodeficiency virus/Acquired immunodeficiency syndrome; Adherence

Core Tip: Maternal disclosure and peer support are effective in preventing mother-to-child human immunodeficiency virus transmission.

INTRODUCTION

Pediatric HIV infections remain a significant global public health challenge, with over 120000 new human immunodeficiency virus (HIV) infections recorded among children under five years old in 2023[1]. Mother-to-child transmission (MTCT), occurring during pregnancy, labor, delivery, or breastfeeding, represents the primary mode of HIV acquisition in children, with the highest risk observed in low-resource settings. It is well-established that effective interventions for the prevention of MTCT, particularly maternal antiretroviral therapy (ART), substantially reduce this risk to below 5% in breastfeeding children and less than 2% in non-breastfeeding children[2].

Achieving viral load suppression (VLS) in individuals with HIV necessitates consistent daily adherence to ART[3]. However, adverse social determinants, such as lower socioeconomic status, inadequate social support, limited education, and pervasive societal HIV-related stigma, frequently impede access to and retention in ART among mothers living with HIV[4]. Non-adherence to ART, whether due to failure of initiation, intermittent missed doses, or complete cessation of therapy, significantly elevates the risk of MTCT[2,3]. A critical gap in the research literature from developing nations is that VLS estimations are predominantly derived from cross-sectional studies, which, by their nature, capture VLS at discrete time points within the HIV care continuum.

Rwanda, a Central African nation, with a generalized HIV epidemic (adult prevalence 3%) has made major strides in reducing HIV incidence (0.08%) with improved awareness, testing, access, acceptability, and affordability of ART. These national achievements are mirrored at a local level; in the Karongi district, the HIV prevalence among pregnant women attending antenatal care services dropped from 2.7% in 2010 to just 0.3% in 2019[5]. Furthermore, since 2015, the rate of MTCT of HIV within health facilities has reduced below 2%, primarily through expansion of ART services in existing ANC facilities[6].

EVIDENCE OF DISCLOSURE AND PEER SUPPORT IN PREVENTION OF MOTHER-TO-CHILD TRANSMISSION OF HIV IN RWANDA

A recent 24-month retrospective cohort study from Rwanda by Bakari et al[7] highlights further progress in the nation’s fight against HIV. The study found that 91% of mothers achieved sustained viral load suppression, and a perfect infant testing uptake (100% at six weeks) correlating with a low infant HIV incidence of only 0.7%. Further, the study findings indicated that mothers who were married or living with a partner, had disclosed their HIV status, or initiated ART during pregnancy were more likely to maintain VLS. Furthermore, multivariate analysis revealed a statistically significant association between assigning mothers to peer educators and more consistent infant HIV testing.

The findings from Bakari et al[7] further reveal that when women disclose their HIV status to family members, especially male partners, they experience increased familial support which in turn, is associated with improved ART initiation and adherence, as well as timely HIV testing and prophylaxis. These results reasonably align with prior research on the benefits of disclosure. A systematic review and meta-analysis (SRMA) of 21 studies in China found that people living with HIV (PLHIV) who disclosed their status were 2.59 times more likely to initiate ART than those who did not, although no significant improvement in overall adherence was observed[8]. In contrast, a similar SRMA consisting of seven studies from Ethiopia reported that adults who disclosed were 1.64 times more likely to demonstrate good ART adherence compared to non-disclosers[9]. The Bakari et al[7] study provides robust, corroborative evidence for this phenomenon from a prospective design, a higher evidentiary standard, thereby further strengthening the linkage between HIV status disclosure and improved health outcomes.

Women living with HIV frequently encounter substantial challenges related to stigma and mental health. A systematic review and meta-analysis of ten studies from sub-Saharan Africa estimated the pooled prevalence of antenatal depression among pregnant women living with HIV at 39.86% (95%CI: 34.89-44.83)[10]. The secondary benefits of disclosure include alleviation of perceived stigma and subsequent improvement in mental well-being. Women who have disclosed their HIV status to their families are also better positioned to make informed decisions regarding their reproductive health, particularly family planning. Conversely, a systematic review encompassing 26 studies from high-income countries (United States/Canada) observed that persistent stigma and concerns about disclosure negatively impacted mental health, resulting in reduced ART adherence and retention in care among women with HIV[11].

Fear of the consequences of disclosure, such as violence, abandonment, social ostracization, and lack of familial support, constitute major household-level barriers to disclosure, especially in patriarchal and male-dominant societies. Additionally, healthcare workers may lack the necessary sensitization, empathy, and training crucial for promoting disclosure by women through effectively overcoming their stigma and fears. A study from China revealed that nurses and inexperienced healthcare providers, particularly those with lower education levels, tended to also avoid contact with PLWHA[12].

Peer support is when people with similar experiences or challenges (such as having a disease in common) connect with one another to offer and receive mutual assistance, guidance, encouragement, and emotional support. Informal peer support are informal, organic processes that involve reciprocity and social benefits. Structured peer-mentors in context of PLHIV are deliberate, targeted, formal programs to achieve specific health goals including navigation of the treatment pathway from initiation to high adherence, while coping with the disease. Peer-mother interactive programs are increasingly being explored to enhance ART retention and viral suppression, although their effectiveness in directly preventing MTCT has shown mixed evidence. Peer support interventions in PLHIV as per an SRMA including 20 randomized control trials (RCTs) reported a modest but superior retention in care (RR 1.07), ART adherence (RR 1.06), and viral suppression (RR 6.24) among peer-support participants despite considerable heterogeneity in study outcomes[13]. For instance, a cluster RCT from Tanzania did not find peer-mother integration effective in reducing MTCT, despite observed improvements in ART retention, particularly in ART-naive women[14]. Similarly, another RCT conducted in Uganda (2024) demonstrated the effectiveness of peer support in improving ART retention and viral suppression but did not detect a statistically significant difference in rates of infant HIV positivity[15]. Nevertheless, peer mothers are uniquely positioned to provide emotional support to women living with HIV, aiding them in navigating pregnancy, offering practical advice on coping with ART side effects and misconceptions about disease progression. This support can alleviate stress and anxiety, which are often linked to ART non-adherence[10].

Health literacy refers to the adept accessing and application of health information, leading to informed choices, healthier behaviors, and improved health outcomes. However, among PLHIV, health literacy does not always translate into optimal and safe behaviors[16]. Peer mothers can enhance health literacy among women living with HIV by reinforcing healthcare messages and boosting the credibility and trustworthiness of health information in a relatable manner[17]. Evidence suggests that peer support can significantly improve a range of outcomes among PLHIV, with the strongest benefits observed in social and behavioral domains[18].

CONCLUSION

Despite the significant benefits of peer support programs in improving the quality of life and health outcomes in PLHIV, especially pregnant mothers, their implementation and sustainability remain a major public health challenge. Barriers to running effective peer education programs include difficulties in recruiting, training, and compensating peer educators for their time, while ensuring optimal and uniform service quality. An additional ethical dilemma arises in maintaining the confidentiality of peer educator mothers' HIV status within the local community while simultaneously encouraging disclosure as role models. This necessitates major anti-stigma campaigns through robust community engagement and social mobilization. The evidence from the Bakari et al[7] study strongly indicates the value of vigorously advancing the development and integration of peer support programs, through capacity building, within national HIV control programs, particularly in developing countries. Future research should identify through qualitative perspectives, successful strategies for male partner engagement in the disclosure process enabling better understanding of household dynamics and ART adherence in households with PLHIV. Studies with a similar design but a longer follow-up period, extending beyond the initial six-week infant HIV testing, are needed to understand the real-world, long-term effectiveness of these interventions in preventing MTCT of HIV. Additionally, economic evaluations are necessary to determine the cost-effectiveness and feasibility of peer educator programs in resource-limited health systems, which would also better inform and complement future scaling-up efforts.