Reducing HIV stigma: Not enough to keep rural pregnant women on treatment
Stigma is one of a host of challenges experienced by young HIV-positive pregnant women from poor communities in rural Mpumalanga. Research suggests that the damaging effects of stigma are one of the major barriers to pregnant women remaining on antiretroviral treatment (ART), which is critical to ensure that babies are born and remain HIV negative. But a new intervention seeking to equip women to better deal with stigma shows that the goal of adherence in these areas remains elusive. By Andrea Teagle.
One of South Africa’s biggest HIV success stories is the reduction in the number of mother-to-child transmissions. Between 2001 and 2012, there was a 52% decline in new HIV infections among children. The number of sick and dying infants in homes for HIV orphans dropped so quickly that carers faced a new and welcome challenge of schooling and raising the children to adulthood.
But, in some rural areas in Mpumalanga, mothers and children are still slipping through the cracks. HIV prevalence among pregnant women in the province is the second highest in the country, at almost 30%. These women face a plethora of challenges that negatively affect adherence to ART.
These include: limited education and job opportunities; unemployment; depression; race and gender inequalities; financial dependence on partners; challenges accessing health care; and stigma associated with pregnancy and HIV/Aids.
HSRC researcher Shandir Ramlagan and his team, led by Prof Karl Peltzer from the HSRC and the University of Limpopo, and Dr Deborah Jones from the University of Zambia School of Medicine, set about investigating how to help young women to face these challenges and stay on treatment, to ensure their babies are born and remain HIV negative.
The team recruited 683 participants between 8 and 24 weeks pregnant at 12 community hospitals in rural areas of Mpumalanga where mother-to-child transmission was 13% or higher. The participants completed five surveys, prior to and up to one year after birth, about a number of factors relating to treatment adherence, including sociodemographic variables like age and education, HIV knowledge, HIV-related stigma, disclosure, intimate-partner violence and mental health.
In addition, half received an intervention to reduce perceived stigma. This was part of a larger prevention of mother-to-child transfer (PMTCT) pilot programme called Protect your Family, and included two workshops to build resistance to stigma and reduce negative feelings about living with HIV.
The lost women
The researchers found that a third of the women (238 in total) left the programme before completing the second survey.
“The clinics lost a lot of people between 32 weeks pregnant and six weeks after birth,” Ramlagan says. In many instances, tradition required a pregnant woman to return to her mother’s house during this period and then travel to the home of her partner’s mother. Reflecting the legacy of spatial apartheid and the migrant labour system, “home” for many was miles away, often in another province, and some did not take their medical records with them.
It is possible that at least some of the mothers were transferring to other clinics, but in the absence of nationwide computerised health-information systems, there is no way of checking this.
Because of the risk that pregnant women will stop their treatment regimen during this time, health workers routinely advise either exclusive breast-feeding or exclusively formula-feeding. Even for those who exit the ART programme, the risk of the baby contracting HIV from breast milk is negligible as long as he or she is not fed anything else. While human breastmilk is gentle on the baby’s gut, other substances contain larger nutrient molecules that can cause micro-tears in the stomach lining, potentially allowing HIV to pass into the infant’s bloodstream the next time the mother breastfeeds.
Of the women who returned for the follow-up interview 12 months after giving birth, about 28% reported missing their ART dose in the last week, across the 12 clinics.
Importance of disclosure
The researchers found that 42% did not disclose their HIV status to their partners, and 28% did not tell anybody. In line with other research, the team found that women who disclosed their HIV status were more likely to stay on treatment.
Stigma can discourage clinic visits. In an interview, one woman said other patients stopped coming to the clinic for treatment because they were being laughed at and people gossiped when they saw them entering the room where ART was dispensed.
Women who disclosed their HIV status and whose partners were involved in the pregnancy were more resistant to stigma, underscoring the importance of interventions to encourage this.
Of course, for some, disclosure to partners might instead mean violence, abandonment or the loss of critical financial support. However, the study showed that disclosure to anyone, not just partners, is linked to better adherence.
Where the person feels they cannot tell anyone close to them, support groups can help to fill this gap. For example, the additional stigma-related workshops of the intervention group helped to foster supportive relationships between participants. Four components of stigma were measured: personalised stigma, disclosure concerns, negative self-image, and concern about public attitudes.
A year later, the team found that women in the intervention group scored lower on all measures of stigma – the first time that an intervention of this nature has shown to be effective. But, importantly, the intervention did not have the desired effect on adherence: in fact, women in the intervention group were more likely to report missing treatment 12 months after giving birth.
“Because this was a cluster-randomised trial, it is likely that clinics randomised to the experimental condition were more likely to have geographic or area-specific factors that may have negatively impacted adherence,” Ramlagan notes. The intervention group also had significantly more non-adherent participants at the start of the study, which might also have impacted the findings.
However, the fact that reduction in perceived stigma did not translate into sustained improved adherence suggests that there are other important obstacles to remaining on treatment. The findings reflect those of other studies that show a drop in ART adherence post birth.
“People look at the necessity of taking the medication versus the concerns of taking it,” Ramlagan says, noting the unpleasant side effects of ART. “If your necessity outweighs your concerns, you take your medication. Now the baby’s born, the baby’s HIV negative… So the necessity to protect the baby is no longer there.”
Presenting their findings to Mpumalanga’s department of health – and incorporating suggestions from patients and health-care workers – the researchers recommended community-outreach education sessions to reduce misperceptions and stigma around HIV/Aids, allowing for the presence of men in prenatal clinic visits, expanding clinic hours and making use of appointments to reduce waiting times.
The mobility of the population underscores the importance of a national digitised health-data system. This would reduce duplication of tests and ensure better linkage to care, better health outcomes, and more accurate statistics of the number of people living with HIV who fail to stay on treatment.
Author: Andrea Teagle, HSRC science writer