Women with HIV feel 'under surveillance' during pregnancy and early motherhood

Women living with HIV are subject to questioning, monitoring and surveillance of their choices during pregnancy, childbirth and the early stages of motherhood, according to Canadian research presented to the 2nd International Conference for the Social Sciences and Humanities in HIV in Paris last week.

Women feel that they are not only under the gaze of medical professionals and child protection officials, but also friends and family, who may take a particular interest in women’s infant feeding choices.

It has long been argued that women are under particular pressure to conform to social norms during motherhood. Women receive a great deal of expert advice on prenatal screening, breastfeeding and child-rearing from health and social care professionals. The writer Sara Ruddick has said that “Mothers are policed by...the gaze of others...teachers, grandparents, mates, friends, employers, even an anonymous passerby can judge a mother.”

And while motherhood is a highly valued social role that women are often expected to fulfil, perceptions of HIV infection can disrupt this. Firstly, there may be a suspicion that women have acquired HIV through promiscuity or drug use, putting into question their ability to be a ‘good mother’. Secondly, mothers are not expected to expose their children to the risk of infection and illness.

In Canada, the monitoring of women with HIV takes on a particular character, given the country’s excessive use of the criminal law to punish non-disclosure of HIV status, exposure to HIV and transmission of HIV. Whilst most cases have concerned heterosexual contact, in 2006 a woman was convicted after her baby became HIV positive. During pregnancy, she had stopped taking antiretroviral medication and had avoided specialist services.

Research

As part of a larger, mixed-methods research project, Saara Greene of McMaster University conducted interviews with 33 women during their third trimester of pregnancy and three months after giving birth. One woman commented:

“When people hear that you are HIV positive they automatically think, ok, you shouldn’t be having babies.”

One of the interviewees was diagnosed during her first pregnancy and was very conscious of the large number of healthcare professionals who quickly became aware of her status:

“Finding everything out…it changed my whole pregnancy cause I had to get monitored more and then...when you go into the hospital there’s always a random person that’s checking your file so it’s like everyday you are, like, melting cause you’re like, Oh God!, one more person has seen that.” 

Moreover, the extra monitoring made her feel that she was treated "differently" to other mothers in her community.

One interviewee felt that generally she lived a "normal" life and HIV was not part of her identity. However, the extra attention during pregnancy made her feel that HIV had “become who I was”, and this raised questions about whether she would want to become pregnant again.

During the first few months of a baby’s life, the medical surveillance overlapped with scrutiny from family and friends, especially in relation to infant feeding choices.

“She kept asking me, she had asked me on the phone if I’m breastfeeding, I told her, yes, I was breastfeeding…She came and asked me again, I was going to get upset, but I just didn’t want any misunderstanding, like, why will you keep asking me this same question?”

Greene noted that women of all ethnicities – not just African women – were under pressure from peers to breastfeed. As they felt they could not, women generally felt a sense of loss.

“I go to church every Sunday…If I go now and she’s struggling with the bottle…They will be asking me to breastfeed her and I don’t want to be lying…I’ll tell them that I don’t breastfeed in the day…God forgive me, I don’t like lying, but I don’t want to start explaining too many things.”

Women feared that the questioning of their feeding choices could lead to their HIV status being revealed. As was also found in research conducted in London, some women isolated themselves and avoided social contact because of this.

Family and friends pressured women to breastfeed, while health professionals insisted on formula feeding. While women struggled to balance competing demands, fears about the criminalisation of HIV transmission inhibited them from discussing difficulties with healthcare providers.

Around a quarter of the respondents were involved with child-protection officials. Their intervention could potentially lead to a mother losing custody of her child. Women had to document and justify their personal choices.

“I went right away to the doctor and got referred and went through the whole process, everything was fine, the doctor was completely happy I did everything on time and started my medication on time and my virals were low and just to be safe for the baby, you know, I have to take the medication so I’ve done everything I had to, but the Children’s Aid Society is, like, you should have started it in [sooner]... so I gave them all of the dates...and they are still using it against me.”

For Saara Greene, this surveillance results in mothers having their authority challenged, undermined or taken away. She called for moving away from a state of “social surveillance, monitoring, interrogation and criminalisation of HIV-positive mothers” to a situation in which mothering with HIV is normalised, accepted, and left alone.