HIV stigma blocks efforts to prevent mother-to-child transmission in India
Outreach workers identify a number of personal, social, and structural challenges that impede efforts to prevent mother-to-child transmission of HIV in India.
Research involving 60 prevention of mother-to-child (PMTCT) outreach workers describes numerous and persistent challenges facing HIV-positive pregnant and breastfeeding women.
The study, published in PLOS One, is the first from India to focus solely on outreach worker experiences. Researchers conducted focus groups with outreach workers in Maharashtra, a state in western and central India with an antenatal HIV prevalence of 0.5%, nearly twice the national average. Although India’s PMTCT programmes are substantial, reaching 9.75 million pregnant women with HIV testing in 2014/2015, and providing 97% of HIV-positive pregnant women and their babies with antiretroviral treatment (ART), a number of gaps remain.
Evidence suggests that the proportion of HIV-exposed infants being tested is low, ranging from between 15% to 59%. In addition, only 20% of HIV-positive mothers are thought to follow World Health Organization guidelines which call for exclusive breastfeeding in the first six months of a baby’s life. Mixed feeding remains a common practice among mothers living with HIV, which can increase a baby’s risk of getting HIV by three or four times.
Outreach workers are crucial in closing these gaps by accompanying HIV-positive pregnant women and new mothers to ART centres, providing monthly home visits during pregnancy, attending labour, and visiting women for prolonged periods after delivering.
HIV stigma was the most widely discussed challenge. Focus groups participants reported that women were fearful of disclosing their HIV status to husbands and other family members. This resulted in women stopping treatment because they felt unable to explain why they were on medication or might be experiencing side effects. In many cases, women had not received adequate counselling explaining the importance of staying on treatment or preparing them for side effects before initiating treatment.
These issues were also reflected in attitudes towards giving antiretroviral treatment (ART) to infants.
Outreach workers reported how mothers often saw their baby as healthy and so not in need of medication, and worried about the side effects of giving ARVs to their child. Again, HIV-related stigma meant many had concerns about being seen giving their baby medication in case it led to a situation in which their HIV status was revealed to family members.
Outreach workers cited the fact that some women could not afford to visit clinics on a monthly basis for ART refills as another major barrier stopping women from adhering to treatment. Outreach workers in rural areas, where long distances to health centres and infrequent public transport are common, were particularly likely to report this issue.
Outreach workers also described how women would become reluctant to remain in care after being treated rudely by PMTCT workers in clinics. Long waits, staff shortages and stock-outs of infant HIV testing kits and antiretroviral treatment also discouraged women from attending clinics. Outreach workers also pointed to a lack of knowledge among women about the need to test infants exposed to HIV at 6 weeks, 6 months, 12 and 18 months after birth, meaning many did not attend clinics to carry these tests out.
The social norm of giving newborns honey, sugar water, and gutti (a semi-solid paste of almonds) was seen as a key reason for the high proportion of women who reject exclusive breastfeeding. However, outreach workers also highlighted how women were often given conflicting advice on the issue from clinicians who told them to formula feed.
Findings from the study have informed the design of a number of interventions to improve PMTCT services through the COMmunity-Home Based INDia (COMBIND) Prevention of Mother-to-Child Transmission (PMTCT) of HIV programme. These include specialised behavioural training for outreach workers, and a health app with scripts and videos, designed to help outreach workers support pregnant women and new mothers more effectively.