Childbirth experiences of women living with HIV: A neglected event in the PMTCT care continuum

In 2013, the Word Health Organization released new prevention of mother-to-child transmission of HIV (PMTCT) guidelines, known as Option B+, to promote lifelong access to antiretroviral therapy (ART) for all pregnant and breastfeeding women living with HIV (WLHIV) [1]. As of 2017, all countries in sub-Saharan Africa (SSA) have adopted the Option B+ guidelines into their PMTCT programs, drastically expanding access to ART. Since 2011, the number of WLHIV covered by ART in SSA has risen from 3.7 million (29.2% of eligible women) to 8.7 million (61.7% of eligible women) in 2016 [2]. Expanded access to ART via PMTCT programs has the potential to reshape HIV landscape by promoting the long-term health of mothers, preventing vertical transmission of the virus, and mitigating the spread of HIV to sexual partners [1].

The success of Option B+ is largely dependent upon retention in HIV care during the pregnancy and early postpartum periods to prevent transmission to the child, and then beyond to meet larger goals of universal ART coverage and sustained viral suppression. Thus far, research on Option B+ programs has identified high rates of loss to follow up [3,4]. Together with Knettel and colleagues, we conducted a systematic review and meta-analysis of retention under Option B+, which synthesized 22 studies (n = 60,890) and produced pooled estimates of retention of 79.4%, 74.5%, and 69.3%, at 6, 12, and 24 months after initiation of ART, respectively [4]. Studies examining retention in PMTCT care have highlighted the influence of partner disclosure, social support, concerns about privacy and stigma, and readiness for long-term treatment as primary barriers to sustained care engagement [3–5]. This growing body of literature has provided important knowledge about HIV care engagement and identified important psychosocial and structural factors associated with loss to follow up. However, almost all of the published studies measure retention in care starting from time of HIV diagnosis or ART initiation [4]. Since women begin HIV care at different stages of pregnancy, the timing and impact of childbirth is not captured, and little is known about how women’s childbirth experiences may influence the PMTCT care cascade.

The experience of childbirth has been largely overlooked in the discussion of PMTCT programs. Pregnant WLHIV not only experience the expected stressors of childbirth in a resource-limited setting but also face additional challenges due to their HIV status [5–7]. As we monitor the impact of Option B+ and develop interventions to support its implementation, it is essential to consider the childbirth experience as a key juncture in the PMTCT cascade that could shape women’s commitment to HIV care during the postpartum period and beyond.

Childbirth experiences in SSA

From 1990 to 2012, the proportion of deliveries attended by a skilled health professional in SSA rose from 33% to 53% [8], yet the quality of care remains low in many settings due to the lack of adequate staff, training, and supplies [9]. Additionally, women in SSA experience high rates of mistreatment during labor, including physical abuse, verbal abuse, stigma, discrimination, and neglect [10]. A study in Tanzania (n = 2,000), found that 14.8% of women delivering in a health care facility experienced some form of abuse, with no significant differences between WLHIV and women without HIV [11].

While the possibility of a negative health care experience during childbirth is not unique to WLHIV, these events may have major ramifications when viewed in the context of PMTCT care. In addition to the normal challenges associated with childbirth in resource-limited settings (e.g. access to transportation, financial costs associated with delivery, lack of basic and emergency obstetric services, occurrence of abuse and neglect) [9], living with HIV has the potential to further complicate the childbirth experience. During pregnancy and labor and delivery, women may be coping with a new HIV diagnosis, worrying about disclosing their HIV status to partners or family members, anticipating or experiencing abandonment or violence, or worrying about transmitting the virus to the child [3–5]. Moreover, successful implementation and adherence to PMTCT guidelines during labor and delivery depends on effective communication [1], which is only possible if both the woman and her providers feel capable of discussing the unique needs of WLHIV. In order to understand what drives and motivates post-partum care engagement, additional research is needed to disentangle the impact of childbirth and the ways in which women’s experiences intersect and interact with issues related to living with HIV during pregnancy and receiving PMTCT and antenatal care.

Integrating respectful maternal care into PMTCT programs

The success of Option B+ requires continual engagement with HIV care throughout pregnancy and the postpartum period. The critical experience of childbirth is often overlooked in the role it may play in facilitating or impeding long-term retention. To date, interventions to improve retention in PMTCT have focused on the pregnancy or postpartum periods using mobile phone reminders, increased social support (e.g. peer counseling or partner participation), or health care system interventions (e.g. restructuring or integrating services) [12]. Neglected in this work is the fact that poor delivery experiences may create barriers to sustained HIV care engagement by changing women’s perceptions of care and their trust in providers or the health care system. Traumatic experiences during childbirth may contribute to residual psychosocial distress and avoidance of future HIV care.

Research on these topics should focus on identifying the types of experiences during birth or interactions with providers or facilities that either promote or impede future care engagement. These data could inform the development of programs to improve the quality of care and facilitate a successful transition to postpartum care. PMTCT programs can learn from, and contribute to, the movement for respectful maternal care [9], which recognizes that the event of childbirth may have important implications for women’s long-term health. The global community must expand its efforts beyond eliminating vertical transmission of HIV and include a focus on building capacity for health care services that can respect women, promote and protect their dignity, and enhance their trust in the health care system. With this lens, each interaction with the health care system, including childbirth, should be examined for its potential to facilitate long-term retention in ART programs. Integrating efforts to ensure access to a fundamental human right, respectful maternal care, and simultaneously supporting the implementation of Option B+ has the potential to reshape the health and wellbeing of millions of women across SSA.