Abstract

Globally, women are at increased vulnerability to HIV due to biological, social, structural, and political reasons. Women living with HIV also experience unique issues related to their medical and social healthcare, which makes a clinical care model specific to their needs worthy of exploration. Furthermore, there is a dearth of research specific to women living with HIV. Research for this population has often been narrowly focused on pregnancy-related issues without considering their complex structural inequalities, social roles, and healthcare and biological needs. For these reasons, we have come together, as researchers, clinicians and community members in Canada, to develop the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) to investigate the concept of women-centred HIV care (WCHC) and its impact on the overall, HIV, women’s, mental, sexual, and reproductive health outcomes of women living with HIV. Here, we present the CHIWOS cohort profile, which describes the cohort and presents preliminary findings related to perceived WCHC. CHIWOS is a prospective, observational cohort study of women living with HIV in British Columbia (BC), Ontario, and Quebec. Two additional Canadian provinces, Saskatchewan and Manitoba, will join the cohort in 2018. Using community-based research principles, CHIWOS engages women living with HIV throughout the entire research process meeting the requirements of the ‘Greater Involvement of People living with HIV/AIDS’. Study data are collected through an interviewer-administered questionnaire that uses a web-based platform. From August 2013 to May 2015, a total of 1422 women living with HIV in BC, Ontario, and Quebec were enrolled and completed the baseline visit. Follow-up interviews are being conducted at 18-month intervals. Of the 1422 participants at baseline, 356 were from BC (25%), 713 from Ontario (50%), 353 from Quebec (25%). The median age of the participants at baseline was 43 years (range, 16–74). 22% identified as Indigenous, 30% as African, Caribbean or Black, 41% as Caucasian/White, and 7% as other ethnicities. Overall, 83% of women were taking antiretroviral therapy at the time of the baseline interview and of them, 87% reported an undetectable viral load. Of the 1326 women who received HIV medical care in the previous year and responded to corresponding questions, 57% (95% CI: 54%-60%) perceived that the care they received from their primary HIV doctor had been women-centred. There were provincial and age differences among women who indicated that they received WCHC versus not; women from BC or Ontario were more likely to report WCHC compared to participants in Quebec. They were also more likely to be younger. CHIWOS will be an important tool to develop care models specific for women living with HIV. Moreover, CHIWOS is collecting extensive information on socio-demographics, social determinants of health, psychological factors, and sexual and reproductive health and offers an important platform to answer many relevant research questions for and with women living with HIV. Information on the cohort can be found on the study website (http://www.chiwos.ca).

Highlights

  • Life expectancy and quality of life for people with HIV in Canada have rapidly improved due to the successes of antiretroviral therapy (ART) and improved HIV care [1,2,3]

  • Indigenous women, women from or who partner with men from HIV-endemic countries, women who use or used drugs, women involved in sex work, young women, and trans women are vulnerable to HIV and constitute the majority of women with HIV in Canada [6,15]

  • CHIWOS aims to be a community-based research (CBR) leader in explicating the concept of women-centred HIV care (WCHC) among diverse women with HIV living in Canada

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Summary

Introduction

Life expectancy and quality of life for people with HIV in Canada have rapidly improved due to the successes of antiretroviral therapy (ART) and improved HIV care [1,2,3]. In Canada, and many high-income countries, these inequities subsequently impact women’s experiences after HIV diagnosis; a phenomenon known as the feminization of HIV [5, 7,8,9] This differs from the HIV gender gap in countries throughout sub-Saharan Africa [10,11,12], where women have been found to more readily engaged in care in some regions due to efforts focused within Maternal and Child Health Programs. This finding highlights the ’gendered’ vulnerability of HIV for women and how this calls for attention at national and regional levels for women-specific HIV services in Canada. Indigenous women, women from or who partner with men from HIV-endemic countries, women who use or used drugs, women involved in sex work, young women, and trans women are vulnerable to HIV and constitute the majority of women with HIV in Canada [6,15]

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