Keeping secrets, disclosing health information: an institutional ethnography of the social organisation of perinatal care for women living with HIV in Canada

Abstract

This paper describes findings from an institutional ethnography that arose out of the concerns of women living with HIV in Ontario, Canada, regarding the disclosure of their HIV status while accessing perinatal care. The enquiry traces the connections between women’s experiences of perinatal care, the activities of healthcare providers delivering such care and the ruling relations that organise women’s experiences and healthcare providers’ activities. Focusing on HIV disclosure as a concern expressed by women, the findings make visible the day-to-day, routinised practices of healthcare providers working in perinatal care for women living with HIV, as well as the ideological discourses of ‘fear of contagion’ and ‘AIDS hysteria’ that contributed to producing the kinds of care experiences that were articulated by women. Opportunities to strengthen perinatal care policies and practices for women living with HIV are discussed.

Keywords:

• Women
• HIV
• disclosure
• institutional ethnography
• perinatal care

Acknowledgements

The author wishes to thank all the participants who were interviewed for this research, and Saara Greene, Christina Sinding, Daniel Grace, Dorothy Smith and Susan Turner for their ongoing mentorship and guidance.

Disclosure statement

The author does not have any conflicts of interest to declare.

Additional information

Funding

Allyson Ion is a Vanier Scholar whose research was funded by a Vanier Canada Graduate Scholarship.