Women were invited to conduct one or more interviews with me, with the flexibility to choose what they felt comfortable revealing. Two-thirds of the sample decided to conduct more than one interview. Second and subsequent interviews held the advantage of deepening interview data, as well as allowing comparison for verification of data and analysis, and for opportunities to examine shifts, continuities and contradictions (Hollway & Jefferson, 2000).
The Clinic Context
The hospital where the research was based is a general hospital, but is known in Johannesburg as a treatment centre for HIV-positive mothers. It is a state hospital and, in contrast to expensive private hospitals, is crowded and understaffed, with limited facilities. All HIV-positive women at this hospital were offered Nevirapine for prevention of mother-to-child transmission in order to reduce the possibility that mothers would transmit the virus to their children. The mechanisms of mother-to-child transmission are very specific. There are three points at which a mother may infect her child: in utero (where there is a 7 per cent chance of infection), during labour or delivery (23 per cent) or through breastfeeding (8 per cent). The cumulative probability of a woman transmitting the virus is estimated at 31 per cent (Department of Health, 2002). Infection rates are reduced if the mother does not breastfeed. Nevirapine is an inexpensive antiretroviral drug that requires minimum dosage to be effective. A single dose of Nevirapine given to the mother before delivery and to the child after birth reduces the probability of mother-to-child transmission by more than half, from 31 per cent to 13 per cent (Department of Health, 2002). Before 2001 this cost only US$4 or, as one comparison acerbically notes, the price of an espresso and croissant.1 Since then, the cost has dropped dramatically. Transmission modes and rates indicate that the majority of children born to HIV-positive mothers are not infected (59 per cent) and that it is not possible for a mother to transmit HIV to her child through normal maternal care. Expectations of maternal infectiousness, therefore, far exceed reality. Few women interviewed received antiretroviral treatment, which was unavailable at the time of the interviews (2003–04). Although the South African government has agreed to provide antiretroviral treatment for all, the rollout of such treatment has been dogged by controversy and has been perceived to be too slow. In 2004 few South Africans infected with HIV had actually been given treatment (TAC, 2004), while in 2008, it was estimated that 524,000 people requiring treatment were not receiving it (TAC, 2008). Unofficially, overextended hospitals seldom provide symptomatic treatment for opportunistic infections, particularly if it is clear that a patient is in the latter stages of the disease, such that people being refused treatment from hospitals has become a frequent occurrence.
The hospital offers three HIV clinics per week. The antenatal clinic for pregnant women monitors their pregnancy, offers psychoeducational counselling and provides the dose of Nevirapine required before labour. The dose required for the baby after birth is administered in the wards. The postnatal clinic monitors babies for the first year after birth. At the time of the study (2003–04), some women were on a trial designed to establish the efficacy of testing babies’ HIV status at four months. Those who were not on the trial had their babies tested when they were one year old. I attended clinics each week and recruited from both. An additional postnatal clinic was run for sick babies. I was advised by the staff not to attend this clinic, because it was predominantly attended by mothers who had refused to test or, when mothers were sick or dead, family members who did not necessarily know the mother’s status: my presence would have risked revealing mothers’ and babies’ status. The clinic most visibly affected by HIV was thus the most invisible and secretive.
General antenatal clinics were run every day. The waiting room was usually crowded. On the HIV clinic day, however, the waiting area was deserted and the clinic looked closed. Patients waited in a small side room. The door was always kept firmly closed. One had to knock and wait to be admitted. The group began early in the morning with a prayer. While women waited to be seen by a doctor, counsellors addressed various topics, including condom use (the demonstration of which prompted mirth or condescension), facts about the transmission of HIV, guidelines for healthy living and the use of Nevirapine. Most women I interviewed enjoyed these clinics, because they could exchange their stories and observe the psychological and physical strength of others. Most women were at least six months pregnant, partly because clinic visits were more frequent in later pregnancy and partly because many women are diagnosed late in pregnancy (either because they are referred late from local clinics who have not offered tests or because they only went to clinics late in their pregnancies). Five hours later, the group ended with sandwiches and coffee before everybody went home. I interviewed in a private room afterwards (or at other times mutually arranged), since women worried that they would miss seeing a doctor, and if the doctor had already been seen, did not want to miss being in the group.
The postnatal clinic took place in a large ward with beds in the waiting area (for babies to be changed on) and a smaller, cordoned-off consultation area. Unlike the antenatal clinic, the door to the ward was open. In this different setting there was less sense of coherence in the group of those who attended. Women spoke to one another while they waited or listened to counsellors, but they came and left at different times, as well as intermittently fetching their hospital files or fetching formula for their babies, which the hospital provided. Treatment was clearly for their babies, and not themselves: babies were weighed, examined and sometimes tested, but mothers needing medical attention were referred to another hospital. Babies often required attention, and several babies were usually crying at any one time. Participation and involvement in the antenatal group were high; in the postnatal group some women sat centrally to talk to one another, while others sat on the periphery and removed themselves from interaction. Mothers with sick babies were usually on the periphery and often hid their babies under blankets, even in the height of summer, as if ashamed of having them seen. At this clinic, I interviewed throughout the day.
Clinics were predominantly attended by black women. In the six months in which I visited clinics, one white woman attended one session. One of the counsellors told me that there were so few coloured women at the HIV clinic because, she thought, stigma was stronger in this community: coloured women diagnosed as HIV-positive were generally apprehensive to attend the group for fear of being recognised and labelled.2 Few staff members were white. Because I am white, patients presumed I was not a patient and was part of the medical team. ‘Race’ remains a visible issue in South Africa, and I had expected racial difference to be an important dynamic in interviews. On my first day in the antenatal clinic, I was greeted with suspicion by the mothers, partly because they were mistrustful of what I might think of them. In discussion, scepticism was voiced regarding whether I, as a white woman, would be able to understand their experiences. They were more concerned, however, about whether I would respect their confidentiality, their immediate assumption being that I would divulge their identities to the press. Some were also suspicious about the participation fee I offered: one woman said that her story was not for sale. We discussed these concerns, and the women concluded that they would need time to think about whether they would like to participate or not.
The next time I attended the clinic, however, the atmosphere was very different, and throughout the research period more women wanted to participate in the research than time allowed. The counsellors were at least partly responsible for this. Overstretched and underpaid, working without supervision, they were eager for me to interview the women, since they could not listen to everybody. The women seemed to observe mutual respect between myself and counsellors, and to be more eager to participate as a result. They also spoke to one another, and a number of women decided to participate after a friend had told them about her own interview. The majority of women had few people to talk to, and commented on how difficult it was to find someone discreet and non-judgmental with whom to talk for any significant period of time.
Within this context, issues of racial difference seemed to become less important. Participants often assumed, for example, that I understood aspects of their cultural and racial environment. Other differences, such as my HIV-negative