I’m a big fan of the Somali-Canadian singer-songwriter, K’Naan. As I wrote this post about our community-based research study, the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a lyric from one of K’Naan’s songs kept coming to me. He sings: “Until the lion learns to speak, the tales of hunting will be weak”. For me, this lyric captures so much of why community-based research and a genuine commitment to GIPA (Greater Involvement of People Living with HIV/AIDS) and MIWA (Meaningful Involvement of Women living with HIV/AIDS) principles are so critical to the advancement of HIV research and related action.
It is through listening to the voices of those living with the virus, their struggles, their successes, and their priorities, that we can collectively advance the state of knowledge about how to improve HIV prevention, treatment, and care. Until we hear these stories from the lion (or lioness, in our case), our understanding of HIV and the prioritization of research, action, and service needs will be stunted and weak.
What is CHIWOS?
CHIWOS is a longitudinal, 5-year, community-based research study that seeks to understand whether women-centred care leads to better health outcomes for women with HIV.
We are a CIHR and CTN funded study, which will enroll 1250 women living with HIV from British Columbia, Quebec, and Ontario – the three Canadian provinces with the largest number of HIV-positive women. The study involves women living with HIV in all stages of the research, from conceptualization and study design, to survey development, to data collection, analysis, and interpretation. The surveys will be administered by a team of Peer Research Associates (PRAs), who are themselves women living with HIV and integral members of the research team. In this way, we hope to yield findings of high value and relevance to the diverse community of women living with HIV in Canada, which, in turn, can have a positive impact on their lives, health, and well-being.
In May 2013, we will start recruiting women into the study. Recruitment will be done through clinics, ASOs, online, peer outreach, and word-of-mouth. We are working with our community partners to reach those women traditionally excluded from participating in research, due to financial, personal, and logistic barriers. As part of their participation, women will be asked to complete a PRA-administered survey at baseline and again at 18 months.
The PRAs and participants are the lionesses of CHIWOS. It is through their voices that the tales and collective understanding about the lived experiences, health and social service needs, health outcomes, and priorities of women living with HIV will be strengthened. On behalf of our team, it is an honour and a privilege to be involved in this study and to have met so many inspiring women along the way.
For further information:
- Angela Kaida, Co-Principal Investigator
- Allison Carter, Provincial Coordinator
- Valerie Nicholson, Community Representative and PRA
Or follow us on twitter: @CHIWOSresearch