Patterns of cesarean birth among women living with HIV in Ontario: A cross-sectional, population-level study.

BACKGROUND: In Canada, as is found globally, women of reproductive age are a growing demographic of persons living with HIV. Combination antiretroviral therapy (cART) treatment enables women living with HIV (WLWH) to become pregnant without perinatal transmission, and they are increasingly planning to become pregnant. Since 2014, Canadian guidelines no longer recommend routine elective cesarean birth (CB) for women who are virally suppressed and receiving cART. It is unknown whether their obstetric care has changed since this update. Our objective was to describe trends in cesarean births among WLWH in Ontario, Canada, over a 12-year period. METHODS: Our research is co-led and codesigned with WLWH. We conducted a retrospective population-level cohort study using linked health administrative databases at ICES (formally, the Institute for Clinical and Evaluative Sciences). Participants were all women who gave birth in Ontario, between 2006/07 and 2017/18. We assessed their intrapartum characteristics and used multivariable regression to determine an association between HIV status and CB, controlling for sociodemographic and clinical variables. RESULTS: Since 2014, the overall proportion of CB among WLWH remained stable and was higher than among women without HIV (39.9% vs 29.0%, P < 0.001). In addition, the proportion of primary CB decreased between 2006 and 2010 and between 2014 and 2018 (28.5%-19.3%), whereas the proportion of repeat CB increased (13.1%-20.5%, P = 0.013). CONCLUSIONS: Because of decreasing HIV-related indications for CB, more practitioners may be following the guidelines for first-time mothers. Currently, no guidelines exist for care of WLWH with a previous CB, and opportunities for vaginal birth may be missed in this population.

Surviving Surveillance: How Pregnant Women and Mothers Living With HIV Respond to Medical and Social Surveillance.

Pregnant women and mothers living with HIV are under surveillance of service providers, family members, and the community at large. Surveillance occurs throughout the medical management of their HIV during pregnancy, preventing HIV transmission to their baby, infant feeding practices, and as part of assessments related to their ability to mother. Enacted and anticipatory HIV-related stigma can exacerbate the negative impact that being under surveillance has on mothers living with HIV as they move through their pregnancy, birthing, and mothering experiences. In response, women living with HIV find ways to manage their experiences of surveillance through engaging in acts of distancing, planning, and resisting at different points in time, and sometimes enacting all three practices at once. Positioning the narratives of pregnant women and mothers living with HIV in relation to their experiences of surveillance illuminates the relationship between the surveillance of mothers living with HIV and HIV-related stigma.

"Why are you pregnant? What were you thinking?": How women navigate experiences of HIV-related stigma in medical settings during pregnancy and birth.

Having children is a growing reality for women living with HIV in Canada. It is imperative to understand and respond to women's unique experiences and psychosocial challenges during pregnancy and as mothers including HIV-related stigma. This qualitative study used a narrative methodological approach to understand women's experiences of HIV-related stigma as they navigate health services in pregnancy (n = 66) and early postpartum (n = 64). Narratives of women living with HIV expose the spaces where stigmatizing practices emerge as women seek perinatal care and support, as well as highlight the relationship between HIV-related stigma and disclosure, and the impact this has on women's pregnancy and birthing experiences.

"Why Aren't You Breastfeeding?": How Mothers Living With HIV Talk About Infant Feeding in a "Breast Is Best" World.

Infant feeding raises unique concerns for mothers living with HIV in Canada, where they are recommended to avoid breastfeeding yet live in a social context of "breast is best." In narrative interviews with HIV-positive mothers from Ontario, Canada, a range of feelings regarding not breastfeeding was expressed, balancing feelings of loss and self-blame with the view of responsibility and "good mothering" under the current Canadian guidelines. Acknowledging responsibility to put their child's health first, participants revealed that their choices were influenced by variations in social and cultural norms, messaging, and guidelines regarding breastfeeding across geographical contexts. This qualitative study raises key questions about the impact of breastfeeding messaging and guidelines for HIV-positive women in Canada.

Resilience and psychosocial factors linked to symptom experience during the menopause transition for women living with HIV.

OBJECTIVE: Women living with HIV (WLWH) are commonly symptomatic during perimenopause and menopause (≥1 y without menstruation), however, little is known of risks for symptoms and their timing. We analyzed these unwanted experiences to inform care. METHODS: WLWH (≥40 y) in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study rated midlife experiences for seven symptoms and a symptom composite (from 0 to 21). Timing was categorized into four phases: i) perimenopause (flow in the last year), ii) 1-2 years from final menstrual period (FMP), iii) 2-5 years post-FMP; and iv) >5 years post-FMP. Resilience (standardized out of 100) was assessed based on Wagnild's Resilience Scale. Univariable/multivariable mixed effects linear regression assessed correlates of symptom intensity by composite score. RESULTS: Among 457 peri-/menopausal women mean age 54.7 (±6.6) over two time points (703 observations), 88% experienced ≥1 mild symptom; 75% were of moderate and 55% severe intensity. The most frequently reported symptoms were joint/muscle stiffness (67%), depressed mood (67%), and hot flashes (57%). After adjusting for reproductive phase, we found that women with greater resilience had fewer/lower intensity symptoms (symptom score 1.37 [2.30 to 0.44] lower; P = 0.004); those with depressive symptoms and recreational drug use (respectively) had more/higher intensity symptoms (scores 1.71 [0.61 to 2.82] [P = 0.002]; 2.89 [2.09 to 3.77] [P<0.001] higher). Symptoms were most intense in perimenopause and declined with increasing menopausal years (P = 0.03). CONCLUSIONS: WLWH experiences a high burden of midlife symptoms, decreased by resilience and most intense during perimenopause. Unwanted experiences were linked to psychosocial and behavioral factors. These data encourage HIV providers to adopt a bio-psychosocial approach to midlife management.

Envisioning Women-Centered HIV Care: Perspectives from Women Living with HIV in Canada.

BACKGROUND: Women comprise nearly one-quarter of people living with human immunodeficiency virus (HIV) in Canada. Compared with men, women living with HIV experience inequities in HIV care and health outcomes, prompting a need for gendered and tailored approaches to HIV care. METHOD: Peer and academic researchers from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study conducted focus groups to understand women's experience of seeking care, with the purpose of identifying key characteristics that define a women-centered approach to HIV care. Eleven focus groups were conducted with 77 women living with HIV across Quebec, Ontario, and British Columbia, Canada. RESULTS: Women envisioned three central characteristics of women-centered HIV care, including i) coordinated and integrated services that address both HIV and women's health care priorities, and protect against exclusion from care due to HIV-related stigma, ii) care that recognizes and responds to structural barriers that limit women's access to care, such as violence, poverty, motherhood, HIV-related stigma, and challenges to safe disclosure, and iii) care that fosters peer support and peer leadership in its design and delivery to honor the diversity of women's experiences, overcome women's isolation, and prioritize women's ownership over the decisions that affect their lives. CONCLUSION: Despite advances in HIV treatment and care, the current care landscape is inadequate to meet women's comprehensive care needs. A women-centered approach to HIV care, as envisioned by women living with HIV, is central to guiding policy and practice to improve care and outcomes for women living with HIV in Canada.

"Hear(ing) New Voices": Peer Reflections from Community-Based Survey Development with Women Living with HIV.

BACKGROUND: The Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) engaged in an innovative community-based survey development process. OBJECTIVES: We sought to provide 1) an overview of the survey development process, and 2) personal reflections from women living with human immunodeficiency virus (HIV; "peers") on their own observations of strengths and short-comings of the process and opportunities for improvement. METHODS: Guided by the principles of community-based research (CBR) and meaningful involvement of women living with HIV (WLWH), CHIWOS coordinated a national, multidisciplinary research team, and facilitated a community based survey development process. LESSONS LEARNED: Four key lessons emerged highlighting the importance of 1) accommodating different preferences for feedback collection, 2) finding the right combination of people and skills, 3) formalizing mentorship, and 4) creating guidelines on survey item reduction and managing expectations from the outset. CONCLUSIONS: Peers discussed the strengths and weaknesses of participatory methodologies in survey development.