Perinatal care experiences of mothers living with HIV in Ontario, Canada

Study protocol: becoming and being a mother living with HIV - a multicentre longitudinal mixed methods study among pregnant women living with HIV, non-pregnant women living with HIV and pregnant women not living with HIV in a high-income setting (the 2B MOM study)

“…The success of combination antiretroviral therapy (cART) has resulted in a relative normalisation of pregnancy and a dramatic decrease in perinatal HIV transmission 1–3. Despite these advancements, women living with HIV (WLWH) still face complex medical and psychosocial issues during pregnancy, childbirth and postpartum 4 5. Although there has been increase in the annual number of HIV pregnancies in the last decade, both in Scandinavia and internationally,1 6 a gap exists in the research literature on the experiences of becoming and being a mother while living with HIV in today’s current context.…”

“…Several studies have shown that WLWH have fertility desires similar to the desires of the general population 18 19. Despite the normalisation of pregnancy in WLWH, becoming and being a mother with HIV is associated with unique pregnancy and postpartum considerations 5. In addition to the usual stresses of new motherhood, WLWH must also cope with stressors that include their own health, the unknown infectious states of their infants and attending to their infants’ unique needs such as the administration of prophylactic medications 5.…”

“…Despite the normalisation of pregnancy in WLWH, becoming and being a mother with HIV is associated with unique pregnancy and postpartum considerations 5. In addition to the usual stresses of new motherhood, WLWH must also cope with stressors that include their own health, the unknown infectious states of their infants and attending to their infants’ unique needs such as the administration of prophylactic medications 5. In Scandinavia, national guidelines recommend not breastfeeding to WLWH as a small risk of perinatal transmission of HIV through the consumption of breastmilk remains, even in the context of cART 8 14 16.…”

“…Thus, WLWH continue to contend with complex medical and psychosocial issues during pregnancy and early motherhood 5 33. Previous research in WLWH has concentrated on the physical health of the mother, prevention of perinatal transmission and the health of the unborn baby 34 35.…”

Examining Privacy Regulatory Frameworks in Canada in the Context of HIV

“…The delivery of healthcare includes the collection, use and disclosure of personal health information (PHI). For WLWH, the disclosure of their HIV status during a healthcare encounter may have particular consequences including explaining to family and friends, who they may not have planned to disclose to, what it means to live with HIV ( Greene et al 2016 ; Ion et al 2016 ). From the perspective of WLWH, the HIV status can be disclosed in a number of ways in the course of providing care to both WLWH and their babies during the perinatal period, for example, labelling “HIV” on intravenous medication administered to WLWH during childbirth; when discussing women's HIV medications including potential allergies; while administering HIV medications to the baby including explicitly referring to “AZT” or the baby's “HIV medications;” leaving hospital records open in the woman's room for all to see, and writing “HIV” directly on the front or inside of the woman's chart; and when discussing breastfeeding avoidance and the availability of formula as an infant feeding alternative.…”