Risk and preventing perinatal HIV transmission: uncovering the social organisation of prenatal care for women living with HIV in Ontario, Canada

Abstract

This paper presents an institutional ethnography that explored how risk discourse organised the experiences of pregnant women living with HIV and was reproduced in the work of healthcare providers operating in a ‘high risk’ prenatal clinic in Ontario, Canada. This inquiry began from the standpoint of pregnant women living with HIV, and made connections between women’s experiences, the work of healthcare providers delivering prenatal care, and the ruling relations that organised women’s experiences and healthcare providers’ activities. The study revealed how risk was an omnipresent discourse in women’s lives and became visible through the treatments women were prescribed, the prenatal clinic appointment schedule women were expected to follow, and the application of medical interventions. The discourse of risk coordinated the work of healthcare providers and was inextricably linked to practices that prioritised foetal health. Women’s daily realities and experiences were overshadowed by the healthcare providers’ focus on the foetus and mitigating perinatal risks. As a result, the work women did to organise their lives to participate in care, and the physical and emotional costs they experienced when attending their appointments, taking their medicines, and following clinical procedures were overshadowed within an institutional context where the primary goal was to reduce risks to their babies – even if women shared concerns and aspirations about preventing perinatal HIV transmission. Women’s experiences reveal some important consequences regarding the current organisation of prenatal care that emphasises risk and possible ways to enhance prenatal care policies and practices.