Many women living with HIV believe that HIV care for the mother’s own health is unimportant once the baby is born, especially if the infant tests HIV negative, according to qualitative research in South Africa. This may be part of the explanation for high rates of drop-out from programmes which aim to enrol all pregnant women living with HIV on lifelong antiretroviral therapy (ART) regardless of CD4 cell count – the Option B+ policy.
The findings come from interviews and focus group discussions with women who had received antenatal, postnatal and HIV care from one of the only clinics in South Africa implementing Option B+. They are reported in the September 1 issue of the Journal of Acquired Immunity Deficiency Syndromes.
Option B+ refers to the recommendation that all pregnant and breastfeeding women should be offered and provided with lifelong ART, regardless of clinical stage and CD4 count. It was developed as an approach that would be easier to implement due to its simple 'one size fits all' nature, enabling women to access antiretroviral treatment in settings with poor access to CD4 testing.
Previous research has shown that women who begin antiretroviral therapy under Option B+, with a CD4 cell count above 350 cells/mm3, are considerably more likely to be lost to follow-up than women who start treatment because of a low CD4 cell count. The gains sought by expanding uptake of HIV treatment access through Option B+ will depend on the proportion of women who adhere to treatment and are retained in care. The challenges of achieving high retention under Option B+ in Malawi have been previously reported by aidsmap here and here.
Fifty-eight women took part in interviews or focus group discussions. Most participants worked full-time but were poor; the clinic they attend serves an area of Johannesburg characterised by poverty, migration from other parts of Southern Africa, and high burdens of HIV and TB.
When asked why other women living with HIV might not return for care after childbirth, the most frequently given reason was a perception that some mothers care more about their babies’ health than their own. This is illustrated by comments from two respondents:
“Most of the pregnant women take their medication only to prevent passing on the virus to the baby and do not care about their health.”
“I think most of them after giving birth to HIV-negative baby feel it is no longer important for them to come to the clinic.”
This appeared to be linked with the stigmatisation of HIV infection and women’s difficulties in disclosing their own HIV status to partners, family members and employers. Women reported that pregnancy provided a socially acceptable reason to attend health services and take medications. After pregnancy was over, they did not know how to explain their health needs.
“I didn't have a problem [with adherence] because even at work, I used to take my tablets. [If others asked] ‘What are those tablets for?’ I said it's because I'm pregnant.”
“The boss cannot understand why you are taking a day off every month … if you take off this month, if you want another off, it's a problem. So you end up not going to the clinic.”
In common with other studies of poor engagement with care of people living with HIV, the researchers found that non-disclosure and fear of accidental disclosure were substantial barriers to continuing retention in care. It could combine with practical problems, such as the cost of travelling the clinic, difficulties arranging time off work and child care and inconvenient clinic opening hours.
“It's not easy. One day she [employer] will say, ‘Let me take you to my doctor … it will be quick because here [your clinic] you spend the whole day … let me make it easy … 10 minutes you get the appointment and then by 11:00 you are back from the doctor's.’ It will be a problem if you don't tell him or her [you have HIV].”
The researchers also found that experiences of poor treatment by healthcare staff, including at other clinics, discouraged women from ongoing engagement with antiretroviral therapy. Some respondents reported being scolded and having their confidentiality breached by staff who did not think that women with HIV should become pregnant. Others were singled out for being migrant workers in South Africa.
A number of these concerns undermine adherence and retention in care for a wide range of people living with HIV in numerous settings. But the authors highlight specific issues affecting women who may have different motivations for engaging with care before and after the birth of their child.
“Numerous misconceptions reported during the interviews highlight the importance of coupling ART initiation with adherence counseling during pregnancy and after delivery and underscore the need for new interventions that address the importance of remaining in HIV care and adhering to treatment for the mother's own health and the infant's after delivery, particularly if breast-feeding.”
Clouse K et al.“What They Wanted Was to Give Birth; Nothing Else”: Barriers to Retention in Option B+ HIV Care Among Postpartum Women in South Africa. Journal of Acquired Immune Deficiency Syndromes 67: e12-e18, 2014. (Full text freely available here).