Despite availability of free HIV care in many low- and middle-income countries, fewer women living with HIV (WLHIV) remain in care in the first year after childbirth than during pregnancy. WLHIV who do not stay in care do not receive antiretroviral therapy and are at increased risk of passing HIV to their child or partner and may also experience worse HIV-related health outcomes. UNAIDS estimate that about 1 in 5 HIV-exposed children in Ghana become infected with HIV by the time of cessation of breastfeeding. This rate of mother-to-child transmission (MTCT) is the second-highest in West Africa and the fourth-highest among the 21 focus countries UNAIDS tracks.
The reasons why the drop-out rates of HIV care are higher in the postpartum year than during pregnancy are not well understood. Researchers have offered several theories: women may fall out of care due to fewer scheduled encounters with the healthcare system, due to a decline in perceived susceptibility of MTCT after childbirth, due to prioritization of their child’s health over their own, or due to challenges with childcare — but there is little evidence to support any one of these theories over the others.
To contribute toward a better understanding of this issue, we conducted qualitative interviews with thirty postpartum WLHIV in Ghana, recruited in 2016 from two tertiary hospitals in the urban city of Accra. Our new paper in BMC Pregnancy and Childbirth presents the barriers women themselves described.
Women’s accounts suggest that social, economic, and physical health factors, more than a change in individual motivation, may explain why fewer women remain in HIV care in the postpartum year than during pregnancy. Broadly, we found that the social and economic costs of staying in HIV care became higher in the postpartum year and many who dropped out experienced multiple barriers.
Ghana has the potential to eliminate MTCT of HIV; doing so will require a concerted and deliberate effort to support postpartum WLHIV to stay in HIV care.
ART-related side-effects and HIV denial were the strongest barriers during pregnancy and the fear of re-experiencing the ART-side effects continued to keep mothers away from HIV care even after childbirth. One participant shared her story:
During pregnancy, I suffered when I took the drugs due to the side-effects. Thus, anytime I thought of going back for the drugs [after the birth], the thoughts of the side effects came to my mind and troubled me. I became afraid.
The challenge of travel and transport
One unique barrier in the early postpartum months was difficulty traveling to HIV care due to complications from childbirth or prolonged recovery from a cesarean section. For example, one mother remarked:
Most mothers will tell you that the first six months are very tough. Many women take the time to work on themselves since some undergo an operation [i.e., C-section]. Others, too, had a vaginal tear, so they may need some time to take care of themselves. It takes six months or more for a mother to return to a normal life after childbirth [i.e., to be healthy and to visit the HIV treatment centers for care]. Some, too, are single mothers who have no support at home.
Relatedly, for a few of the women who had dropped out of care, childbirth was associated with debt, unemployment, or underemployment. This led to a new reliance on others, such as a partner or relative, to give them money before they could make their HIV care visits, even when their motivation to stay in HIV care was high.
Mode of transportation was the most significant barrier, with increasing costs to mothers facing new sociocultural pressures unique to the postpartum year. Postpartum mothers were motivated to protect their children’s health, and often felt obligated to take a taxi to their clinical appointments instead of the cheaper local bus, called trotro, which they typically took during pregnancy. Taxis could protect their children from the risk of illness and excessive heat common to the hot and crowded trotros, but they were more expensive, costing one participant 70% of her monthly salary.
HIV stigma also contributed to high transportation costs, as some mothers established their HIV care far from their home to avoid being recognized. Further, those who now needed to rely on financial or childcare support to make it to appointments in their postpartum year would find it difficult to do so without disclosing their HIV status.
Priority of pediatric care
As a result of these economic and social challenges, one would expect that mothers who had discontinued from HIV care would also be unable to adhere to their pediatric HIV testing or child well-baby visit schedules. However, we found that all the mothers who had dropped out of HIV care, except one, were engaged with the healthcare system for their child’s health. This behavior suggests that in the context of limited resources, mothers prioritized their children’s health over their own.
To close the pregnancy-postpartum HIV-care retention gap, our results call for a package of interventions that minimize the economic burden of accessing HIV care, diminish stigma, and enhance the management of ART-related side effects. The women in our study recommended that HIV-care providers in Ghana consider extending their medication refills from three to six months. This option will not only reduce transportation costs, but it will also allow mothers to recover physically from childbirth. Ghana has the potential to eliminate MTCT of HIV; doing so will require a concerted and deliberate effort to support postpartum WLHIV to stay in HIV care.