Women living with HIV in Canada are mothers, daughters, grandmothers and partners.
While their individual stories are unique and complex, they share a bond. They are part of a sisterhood.
Together, these women have sparked a conversation about barriers to women-centred HIV care as Peer Research Associates (PRAs) for the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS).
The PRAs, which included 33 self-identified women living with HIV, were recently awarded the CAHR-CANFAR Excellence in Research Award in the Community-Based Research stream.
“I felt honoured and proud of all of the hard work from each and every woman that made up our PRA team,” says Claudette Cardinal, a PRA from British Columbia. “It is an honour to be acknowledged – and at such a big event. This award highlights the accomplishments of all women living with HIV in 2019.”
CHIWOS is a multi-site, longitudinal, community-based research project conducted by, with, and for women living with HIV. The study, which had three interview phases 18 months apart, was also done in collaboration with researchers, service providers and policy-makers.
Between August 2013 and May 2015, the PRAs interviewed more than 1,400 women living with HIV across British Columbia, Ontario and Quebec.
The study marked the first time women from vulnerable communities had their voices heard, their stories told, and their perspectives on the barriers they face when it comes to their health care.
Brigitte, a PRA who conducted interviews in Quebec, says this cross-Canada study was long overdue.
“We absolutely needed to know what women living with HIV were experiencing and feeling in different situations in their lives. Since we were all HIV positive, we were really able to delve deeply into our questions,” she says, adding that participants felt they could be more open about sexual relations and violence that they had experienced in their lives. “I don’t think we could have talked about these topics so openly if it wasn’t for our shared status. It certainly contributed to the study’s success and the honest, genuine responses from the women who participated.”
Brigitte says she wanted to be a PRA because she wanted to help other women living with HIV. She, along with the other PRAs across the country, had the knowledge and experience needed to conduct these interviews with respect and compassion.
“Anytime I met one of these women, regardless of where I met them, I could see that they desperately needed to express themselves,” Brigitte says. “They needed to talk, share and be acknowledged for who they are and everything they have experienced.”
Melanie Lee, who was a PRA in British Columbia, says that their work focused on how women’s-centred care can improve HIV-positive women’s health, and identify gaps in health service needs.
She adds that she was personally impacted through her PRA work.
“I’m interested in research for HIV-positive women because I’m part of the demographic,” Melanie explains. “It was an opportunity to step back into the workforce, as I hadn’t worked for several years due to health issues related to HIV and medication side effects. I enjoy doing public service work, where I can help people improve their health and well-being.”
Claudette, her colleague in British Columbia, says that becoming a PRA allowed her to give back to the community.
For her, the experience was full-circle.
“When I was first diagnosed, my doctor suggested that I participate in a new study which was held at the university where I was to pick up my ARVs,” she explains. “That was my first introduction to research as a participant. To come full circle and to be the one conducting the interviews is why I love the work, and the bonds made with other women. This is my reward.”
She adds that at the end of her survey, one of her participants asked how to get involved as a PRA.
“When women empower other women, they can do what they are passionate about,” Claudette says. “This encourages other HIV-positive women to never give up on their dreams.”
Melanie hopes that CHIWOS can help all HIV-positive women get the services they need for their optimal health and well-being, reduce stigma and discrimination – and, perhaps even violence.
“I hope CHIWOS can help more clinics become women-centred, however, I believe that it should be people-centred care because everyone deserves quality medical and holistic care . . . perhaps create a shift,” she says.
Breklyn Bertozzi, who was a PRA in Ontario, felt the award was well-earned by the entire team.
On a personal level, Breklyn feels that the PRA work was extremely rewarding.
“I think I grew as a person throughout the study. I have learned so much and there were so many touching moments,” she says. “I am a better person after having the privilege to meet with so many of the strong women I’ve met during CHIWOS.”
She hopes that the research will help improve in the delivery of healthcare, and social services, for women living with HIV in the communities that need it the most.
So far, the PRA team has co-authored 30 peer-reviewed publications and six manuscripts in peer-reviewed journals, and their research has been delivered in presentations at local, national, and international conferences. The PRAs’ research on women-centred HIV care has also been included in a toolkit to educate women and care providers.
“CHIWOS offers a view of what is needed most for women in each community the study was done,” says Breklyn. “I am hoping that the information we’ve gathered is taken seriously by the people who have the ability to make meaningful changes.”
Claudette offers these final thoughts: “Hiy Hiy Treaty Four for welcoming a relative from Treaty Six territory. . . I felt like I was returning home . . . Wuniska . . . wake up, awaken, wake up and rise! This Cree is extremely proud and want to take a moment to think of all the women who have gone onto the Spirit world and to ALL WOMEN living with HIV/AIDS to stay strong, don’t give up . . . let us lift one another . . . each of us has a gift and to share with whoever wants to learn about their own inner gifts that has kept each of us united together through research . . . Women of CHIWOS I applauded all of you’s . . . Congratulations!”