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 an...

IntroductionWomen represent nearly one-quarter of the 71,300 people living with HIV in Canada. Within a context of widespread HIV-related stigma and discrimination and on-going risks to HIV disclosure, little is known about the influence of growing social, legal and public health surveillance of HIV on sexual activity and satisfaction of women living with HIV (WLWH).MethodsWe analyzed baseline cross-sectional survey data for WLWH (≥16 years, self-identifying as women) enrolled in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), a multisite, longitudinal, community-based research study in British Columbia (BC), Ontario (ON) and Quebec (QC). Sexual inactivity was defined as no consensual sex (oral or penetrative) in the prior six months, excluding recently postpartum women (≤6 months). Satisfaction was assessed using an item from the Sexual Satisfaction Scale for Women. Multivariable logistic regression analysis examined independent correlates of sexual inactivity.ResultsOf 1213 participants (26% BC, 50% ON, 24% QC), median age was 43 years (IQR: 35, 50). 23% identified as Aboriginal, 28% as African, Caribbean and Black, 41% as White and 8% as other ethnicities. Heterosexual orientation was reported by 87% of participants and LGBTQ by 13%. In total, 82% were currently taking antiretroviral therapy (ART), and 77% reported an undetectable viral load (VL<40 copies/mL). Overall, 49% were sexually inactive and 64% reported being satisfied with their current sex lives, including 49% of sexually inactive and 79% of sexually active women (p<0.001). Sexually inactive women had significantly higher odds of being older (AOR=1.06 per year increase; 95% CI=1.05–1.08), not being in a marital or committed relationship (AOR=4.34; 95% CI=3.13–5.88), having an annual household income below $20,000 CAD (AOR: 1.44; 95% CI=1.08–1.92), and reporting high (vs. low) HIV-related stigma (AOR=1.81; 95% CI=1.09–3.03). No independent association was found with ART use or undetectable VL.ConclusionsApproximately half of WLWH in this study reported being sexually inactive. Associations with sexual dissatisfaction and high HIV-related stigma suggest that WLWH face challenges navigating healthy and satisfying sexual lives, despite good HIV treatment outcomes. As half of sexually inactive women reported being satisfied with their sex lives, additional research is required to determine whether WLWH are deliberately choosing abstinence as a means of resisting surveillance and disclosure expectations associated with sexual activity. Findings underscore a need for interventions to de-stigmatize HIV, support safe disclosure and re-appropriate the sexual rights of WLWH.

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.

BackgroundCommunity-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered.DiscussionThrough the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members.ConclusionsCommunity-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.