The Social Organization of Perinatal Care for Women Living with HIV in Ontario: An Institutional Ethnography

Abstract

My doctoral research begins from the standpoint of pregnant women and mothers living with HIV in Ontario, Canada and explores the concerns that women living with HIV have as they navigate healthcare during pregnancy, childbirth, and early postpartum. Moving beyond a description or abstracted theorization of women’s experiences, I have used institutional ethnography to explicate how women’s concerns are connected to and organized by ruling relations such as the ideological discourses that underpin the work practices of healthcare providers operating within healthcare institutions. This dissertation follows three “threads” that were discovered in the overall institutional ethnographic inquiry, and that form the basis of three manuscripts. The first thread (Chapter Three) focuses on HIV disclosure, which all women who participated in this research expressed as a concern, and uncovers how the issue of HIV disclosure is accounted for in healthcare providers’ work activities. In this analysis, I show how both the women’s and healthcare provider’s concerns about and actions related to HIV disclosure are connected to discourses such as “fear of contagion” and “AIDS hysteria” that continue to permeate public consciousness. The second thread (Chapter Four) focuses on the discourse of “risk” as organizing women’s experiences and healthcare providers’ work, which became visible through medications women were prescribed, the prenatal clinic appointment schedule women were expected to follow, and the medical interventions that were applied to women’s bodies during childbirth and early postpartum. In a third line of inquiry (Chapter Five), I outline how the current organization of “high-risk” maternity care that is delivered by specialists and is located in regional hospitals has particular implications for women’s pregnancy and motherhood experiences, especially for women who live at a distance from these services and/or find it challenging to attend appointments because of employment and familial responsibilities. This analysis shows how the discourses of “risk” and “safety” are differently known and enacted by women and their healthcare providers, and calls into question the classification of pregnancies of women living with HIV as “high-risk.” In following the three threads and tracking the territory of perinatal care for women living with HIV, I illuminate points of disjuncture between women’s and healthcare providers’ ways of knowing HIV in the context of pregnancy and childbirth, and identify possibilities for how healthcare practices can be augmented to respond to the concerns and challenge that women expressed. In the Conclusion chapter, I draw attention to the tensions between the meta-level ideological discourses of “HIV exceptionalism” and “HIV normalization” that run through Chapters Three, Four, and Five, and that are generalized across the HIV and maternity care services that women living with HIV encounter. I end this dissertation with my thoughts regarding implications for the organization of perinatal care for women living with HIV in Ontario.