Identifying the care needs of women living with HIV

HIV Woman ONLINE ONLYThe face of HIV has changed dramatically from the early days of the epidemic. Women now comprise more than half of all people living with HIV around the world. In Canada, an estimated 16,600 women are living with HIV/AIDS out of an estimated 71,300 HIV-positive Canadians. Women also represent an increasing proportion of annual positive HIV test reports, accounting for 23 per cent of the Canada total in 2011, nearly double the proportion observed in 1999 (12 per cent). Despite the changing epidemiology of HIV in Canada and globally, relatively limited research has focused on health issues specific to women living with HIV.

The increasing burden of HIV/AIDS on Canada’s female population is deeply concerning. We know that women face greater biological susceptibility to HIV. Women also face increased vulnerability due to prevailing social inequities including poverty, violence and racial marginalization.

Providing all people living with HIV with appropriate and timely treatment and care is critical to reduce HIV-related morbidity, mortality, and new HIV transmissions. However, women continue to face unique barriers to accessing treatment and care and show poorer outcomes. It’s therefore critical that we gain a better understanding of the needs of women living with HIV.

In an effort to acknowledge and address the gendered barriers to HIV treatment and care for Canadian women, our national team of researchers, clinicians, service providers, policy-makers, and women living with HIV collaborated to develop the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS). After two years of groundwork, CHIWOS was officially launched on October 1, 2013, the start of Women’s Health Awareness Month.

The CHIWOS study will help identify gender-appropriate approaches necessary to support the delivery of comprehensive and high-quality HIV care that more fully meets the needs of women. Supported by the Canadian Institutes of Health Research (CIHR) Institute of Gender and Health, CIHR Canadian HIV Trials Network (CTN 262) and the Ontario HIV Treatment Network (OHTN), CHIWOS is the country’s largest multi-site, longitudinal, community-based research study focusing solely on women living with HIV.

In collaboration with a National Steering Committee, three provincial Community Advisory Boards, and a national Aboriginal Advisory Board, the study brings together a rich diversity of perspectives and specialties from across the country. The study involves women living with HIV in all stages of the research, from the conceptualization and design of the study, to the survey development process, to the collection and analysis of the data.

For far too long, women’s HIV care needs have been overlooked. We have engaged in this research with strong community input and hope that women living with HIV will be encouraged to participate, so that their voices and priorities will be heard.
Researchers will recruit and enroll over 1,250 women living with HIV in British Columbia, Ontario, and Quebec – the three Canadian provinces with the largest number of women living with HIV. Across Canada, 34 Peer Research Associates (themselves women living with HIV) have been hired and have undergone intensive training in research methods, interview techniques, and self care. PRAs have begun administering surveys to eligible participants: people 16 years or older, who identify as women, are living with HIV, and residing in BC, Ontario, or Quebec. Study participants are asked to complete a questionnaire at baseline with a follow-up interview 18 months later. Interviews are taking place at multiple clinics, AIDS service organizations, and other community-based organizations across the three study provinces. Study results will be released in early 2015.

Since the official study launch, the response from the community has been electric. Our phones and inboxes have been filled with messages from women who are eager to contribute their stories to the study. Their input has the potential to change HIV care for women in this country and around the world.

As Valerie Nicholson, a peer researcher for the study said: “This study is giving a voice to women who previously had no voice. My hope is this research will ensure the women in my community, and our children and grandchildren, don’t have to face the same barriers to care I have experienced in my lifetime.”

For more information, including how to participate in the study, please visit our website at