Mothering with HIV : Experiences of Health and Social Surveillance of Mothers living with HIV

Pregnancy and motherhood for women living with HIV in Canada is a success story. At the same time, these women continue to experience HIV-related stigma in a number of health and social care settings, as well as a complicated legal context given the increasing criminalization of HIV across Canada. Developing suitable strategies to support mothers living with HIV requires collaborative partnerships between healthcare providers, community-based service providers and women living with HIV.

McMaster Researcher


Greene, S., Ion, A., Elston, D., Kwaramba, G., Smith, S., Loutfy, M. (2015). (M)othering with HIV: Resisting and Reconstructing Experiences of Health and Social Surveillance. In B. Hogeveen & J. Minaker (Eds.), Criminalized Mothers, Criminalizing Motherhood (pp.231-263). Toronto, ON: Demeter Press.


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What is this research about?

Women living with HIV (WLWH) are increasingly having children because of the success of combination antiretroviral therapy, which can successfully prevent HIV transmission during pregnancy and childbirth. WLWH can also expect longevity with the evolution of HIV to a chronic health condition, resulting in increasing normalization of pregnancy and parenting in the HIV community. At the same time, mothers living with HIV find themselves negotiating social norms and expectations in society regarding what it means to be a “good” mother, as well as increasing criminalization of HIV in Canada, which could have implications for their role as mothers and caregivers. The purpose of this research was to gain a better understanding of the experiences of mothers living with HIV.

What did the researchers do?

The HIV Mothering Study followed 77 WLWH across Ontario from their 3rd trimester to 12 months postpartum. Narrative interviews were conducted to understand women’s experiences and needs during pregnancy and early motherhood. Using a community-based research approach, the research team engaged Peer Research Associates in the data collection process; Peer Research Associates were mothers living with HIV who were hired and trained to conduct interviews with participants and contribute to the analysis of participants’ stories.  

What did the researchers find?

During the interviews, WLWH highlighted a number of spaces where they felt under surveillance by health and social service providers, friends, family and their community. The researchers found that:

  • The unique medical procedures recommended for WLWH during pregnancy, childbirth and postpartum resulted in an increased sense of surveillance and monitoring by the healthcare system.
  • Interactions with health and social service providers who lacked basic knowledge about HIV transmission, prevention and treatment often resulted in stigmatizing care experiences.
  • Societal expectations placed on mothers living with HIV undermines their agency, strength and resilience, as well as their unique experiences of motherhood.
  • The increased surveillance of mothers living with HIV by friends, family, and health and social care providers results in a complex range of emotions including shame, guilt, and a sense of “othering.”
  • Health and social surveillance complicates mothers’ relationships with others and results in mothers feeling a need to isolate themselves, to assess their every move, and to engage in secrecy with friends, family, and healthcare workers to protect their privacy and reduce HIV-related stigma and discrimination.

 Therefore, there is a critical need for increased dialogue and collaboration between all those who aim to support mothers living with HIV and their families.

How can you use this research?

This research helps other members in society to better understand the experiences of mothers living with HIV. It also emphasizes the need to develop more suitable strategies to support mothers living with HIV. Child protection workers, clinicians, community-based providers, community leaders, and the HIV community can learn from this research in order to shape collaborative training, practice and policy initiatives within the child welfare, healthcare, social service and non-profit sectors, and academic institutions that train health professionals.

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