CBR Musings: (M)othering with HIV: Understanding Experiences of Health and Social Surveillance of Mothers living with HIV

Guest post by: Allyson Ion and Saara Greene

Pregnancy and motherhood for women living with HIV (WLWH) in Canada is a success story. WLWH are increasingly having babies because HIV treatment can prevent transmission during pregnancy and childbirth. As WLWH can now expect longevity with the evolution of HIV to a chronic health condition, pregnancy and parenting are increasingly normalized in the HIV community.

At the same time, mothers living with HIV find themselves negotiating social norms, ideals and expectations in today’s society about what it means to be a “good” mother. These expectations often play out in the grocery store, on the bus, at church, and at home when WLWH are under the “gaze” of friends, family, employers, and perfect strangers.

PrintThe HIV Mothering Study was a mixed methods study conducted in Ontario from April 2010 to March 2014. The study followed 77 WLWH from their 3rd trimester to 12 months postpartum. An important component of the study was sitting down with women to understand their experiences and needs during pregnancy and as a new mother through narrative interviews.

During the interviews, WLWH highlighted a number of spaces where they felt under the gaze of health and social service providers, friends, family and their community:

  • Medical surveillance: WLWH were expected to attend a significant number of medical appointments to monitor their pregnancy and HIV treatment effectiveness. As a result, they felt a sense of increased surveillance by healthcare providers and different from other mothers who were not expected to undergo the same amount of monitoring. The unique perinatal procedures recommended for WLWH, for example, HIV treatment for mother and newborn, HIV testing for newborn and breastfeeding avoidance, also resulted in an increased sense of surveillance and monitoring by the healthcare system. Even stepping into a clinic designated for HIV heightened some women’s sense of surveillance and fear of being “found out” by her community.
  • Social service surveillance: living with HIV complicated some women’s relationships with child welfare services (also known as child protection). Although HIV was rarely the reason why women were involved with child welfare, HIV became the “straw that broke the camel’s back” and often resulted in a stigmatizing and challenging relationship. Some women expressed that child welfare workers were often unaware of basic HIV transmission, prevention and treatment facts and, as a result, HIV became a focus of their child welfare surveillance.
  • Infant feeding: WLWH are recommended to avoid breastfeeding because of the possibility of HIV transmission. Infant feeding is an emotionally complex issue for WLWH and another space where they became under the gaze of healthcare providers offering infant feeding alternatives, as well as friends, family, community and society who may believe “breast is best.”

What was the impact of this increased sense of surveillance on the mothering experiences of WLWH in Ontario?

  • Mothers expressed a complex range of emotions as a result of increased surveillance and medical monitoring including shame, guilt, “othering,” secrecy, lying and a need to isolate themselves to protect their privacy, and HIV-related stigma and discrimination.
  • For many women, the lines between medical monitoring, informal surveillance by service providers or family, friends and community and formal criminalization under the law became blurred. Although mothers did not engage in “criminal” acts under the law, by virtue of living with HIV, the acts that they did or did not engage in resulted in mixed emotions around their identity as mothers and raised questions about the social construction of motherhood in the context of living with HIV.
  • Emerging from the mothers’ experiences was this link between surveillance and feeling like a criminal. This is significant because of the momentum gained by the criminalization of HIV non-disclosure since the Supreme Court of Canada decision in 2012 regarding legal obligation to disclose HIV status in sexual encounters. Many women felt that the criminalization of HIV may creep into their lives as a mother and into their relationships with healthcare providers, social workers, child welfare workers and their community.
  • Women engaged in powerful and creative ways of resisting surveillance. They developed counter messages around what it means to be a “good” mother, they drew on agency and leadership to support both themselves and other WLWH and they developed ways to navigate the multiple forms of surveillance, which resulted in positive social and emotional outcomes.

The health and social surveillance of HIV Mothering Study participants was summarized in a book chapter in the edited collection Criminalizing Motherhood by Demeter Press, which is scheduled for publication in January 2015.

For more information about the HIV Mothering Study, please contact Dr. Saara Greene, Associate Professor, School of Social Work, McMaster University at [email protected].