Research has demonstrated that women face not only biological susceptibility to HIV, but also amplified vulnerability due to social factors such as poverty, marginalization, violence, and gender inequity. Women living with HIV have unique care needs, but frequently face inattention to their specific social circumstances and health needs, particularly those of a sexual, reproductive and mental health nature, and may experience diverse challenges in accessing care. While there is limited literature and research about how women use HIV/AIDS health and social services, these factors indicate that many women could benefit from women-specific services that would more fully address their unique needs in a supportive, inclusive, and accessible manner.
The Canadian HIV Women’s Sexual & Reproductive Health Cohort Study, or CHIWOS, was developed to address these issues, and is rolling out in Ontario, Quebec, and British Columbia, and has been initiated in Saskatchewan and Manitoba. Affiliated with CANOC, this prospective cohort study operates within community based research and GIPA (greater involvement of people with HIV/AIDS) approaches, prioritizing the leadership, and valuing the experiences, of the diverse women who are themselves living with HIV. CHIWOS is further guided by a Critical Feminist framework and a continuous analysis of the Social Determinants of Health over a woman’s lifespan, and seeks to put its research into action in order to further social change and justice and to improve lives and care for women living with HIV in Canada. This research and approach aims to further social change for all women living with HIV around the world. The overall study aims to:
- Assess the proportion, distribution and patterns of use and uptake of women-centred HIV care, and factors associated with service uptake among women living with HIV in Canada.
- Estimate the effect of women-centred HIV care uptake on the overall HIV, women’s, mental and sexual and reproductive health outcomes of women living with HIV in Canada.
CHIWOS has brought together a national, multi-disciplinary research team, drawing expertise and experience from various fields and areas of the country. Mona Loutfy, Alexandra de Pokomandy, and Angela Kaida, the principal investigators, are leading the Core Research Team. New principal investigators include Carrie Bourassa, Marissa Becker, Sharon Bruce, and Saara Greene. Advised by the National Steering Committee and by three provincial Community Advisory Boards (CABs), supported by administrative staff and provincial coordinators, and implemented by community Peer Research Associates (PRAs), the study brings in a rich diversity of perspectives and specialties. CHIWOS is being run through and is supported by the Women’s College Research Institute, Simon Fraser University, McGill University Health Centre, Women’s Health in Women’s Hands, the British Columbia Centre for Excellence in HIV/AIDS, the University of British Columbia, and Providence Health Care. The study is funded by the Canadian Institutes of Health Research, the Ontario HIV Treatment Network (OHTN) and supported by CIHR Canadian HIV Trials Network (CTN 262).
1) Formative Phase
Before the usage and impact of ‘women-centred HIV care’ could be assessed, CHIWOS must determine how women living with HIV define and envision how this care would be delivered (Loutfy et al., 2016).
Also, two sets of focus groups were conducted as part of this initial phase: 1) one to determine community definitions and perceptions of women-centred HIV care, and 2) to collect feedback and input on the preliminary survey instrument before it is employed on a larger scale (Abelsohn et al., 2015).
2) National Survey Phase
The plan for the cohort was to recruit and enroll 1250 women living with HIV in the three study provinces. Participants completed a PRA-administered survey at baseline and two years, with a phone call and brief survey at one year to ensure continuity of contact. By the end of this first study wave (October 2013 to May 2015), a total of 1425 participants were enrolled. A subsequent wave (Wave 2) began in September 2015 and ended in January 2017; participants were re-contacted and completed the PRA-administered survey, which incorporated some additional topics. CHIWOS is currently in Wave 3 (March 2017 to September 2018). This study will yield critical information which will help to fill knowledge gaps about women, HIV, and HIV care, and will enable improvements in the health, care, and wellbeing of women living with HIV in Canada.