3 women talk about the power of peer research and women-centred care.
Interviews by RonniLyn Pustil and Dieynaba Deme
Women living with HIV face unique issues related to their health and are less likely than men to be engaged in care, yet relatively few studies focus on the health and well-being of women with HIV and how their quality of care can be improved. Working to fill that gap is a national research project called CHIWOS (the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study).
In the spirit of community-based research, CHIWOS breaks down the hierarchy between the researchers and the researched. Research is done by, with and for women living with HIV, in partnership with academic researchers and clinicians.
Instead of simply consulting with women with HIV, the women are meaningfully involved in every stage of the research. These women, known as peer research associates, or PRAs, play a key role in setting priorities, developing surveys, collecting data and disseminating results (using both traditional avenues like academic publications and non-traditional peer-led community events).
Launched in 2011, CHIWOS enrolled a total of 1,422 women living with HIV in B.C., Ontario and Quebec, who completed a PRA-administered survey. From 2015 to 2017, 1,252 participants completed a second survey. The third wave, currently underway, is set to wrap up in September 2018. Saskatchewan and Manitoba joined the CHIWOS cohort in 2015, using Indigenized arts-based events to collect data and learn about the perspectives and priorities of women with HIV in those provinces.
Meet the PRAs
Claudette, Stephanie and Brigitte are three PRAs who are working to dismantle the barriers and pave the way for women to be meaningfully involved in Canada’s HIV response.
CLAUDETTE CARDINAL, 49
British Columbia PRA
Social work student
Living with HIV for 22 years
Why does CHIWOS matter to you?
After I was diagnosed, I was invited to participate in a qualitative study for newly diagnosed people, which involved speaking to a nurse at the University of Alberta. It was supposed to be a two-hour interview, but it ended up lasting more than four hours. That nurse was the first person I really talked to about having HIV. It was a big relief to pour out my heart to her.
Now I’m on the other side of that research relationship. I’ve been on the CHIWOS Community Advisory Board for over six years. When CHIWOS first recruited PRAs in B.C., I applied for the job and was hired in 2013. I’ve now conducted more than 20 in-depth interviews with HIV-positive women.
It’s like I’ve come full circle. To now be the one asking questions and supporting women is a great honour for me because there are so many people out there who don’t have someone to talk to—that person who will listen and understand what they’re going through, like that nurse in Alberta did for me years ago. To have that connection only happens when you have something significant in common—in this case, being women living with HIV.
What motivated you to become a PRA?
My grandmother. She passed away in 2002. If she were still alive, she would be 103. She believed that we’re supposed to take care of the sick and those who are suffering. That’s one of her values that I carry forward. Now it’s my turn to give back to the community and look after others who have HIV. I’ve come from being an ex-drug user, prostitute and alcoholic to abstaining and being drug-free and healthy. Now I’m a positive role model for others and walking that path.
What makes this work meaningful to you?
Seeing the smiles on the faces of the women who are there to give their input. By participating in CHIWOS, women discover a sense of self-worth and self-empowerment. Having a peer take the time to ask them personal questions and encourage them allows them to engage with the HIV community and challenge themselves in new ways. They’re not stuck at home doing the same old, same old. One participant asked me, “How can I get to do your job?” It shows these women that they just have to get out there and try something. Once they do, doors will open.
When the women come back for their follow-up interview 18 months after the initial interview, it’s so great to hear about them making positive changes in their lives and to witness their accomplishments—if they’ve stayed out of trouble, haven’t used or had a drink or gone to jail since the last interview—those good things that keep lifting them up. I feel like their role in the research helps them keep track of the positive stuff they’ve done since their last interview. Those are the triumphs I celebrate.
Has there been a standout moment?
The Indigenous Women Data Transfer Ceremony in Montreal, in 2017. We transferred the data gathered from 453 Indigenous women living with HIV over to leaders Carrie Bourassa and Renee Masching. It was a very heartfelt moment. Following a water ceremony, I spoke on behalf of the Indigenous women in the study. That was a big moment for me, standing up and representing the women who had passed on and saying my piece about the importance of the data we were transferring over. We had a moment of silence for all the women who had passed and then we proceeded to drink water in the ceremony.
What does women-centred care look like to you?
It’s care that is led by women from start to finish. That means having HIV-positive women working in all departments, involved in everything you would experience at a medical clinic.
When HIV-positive women speak about our issues, we understand one another and can openly talk about our feelings and experiences. It’s about having a place for women where we can have those discussions, without being judged because we come from downtown or we’re homeless, without having to fear those stereotypes that put us into boxes. Once we’re allowed to speak freely and openly to whomever we see as part of our HIV care—the nurse, the psychiatrist, the person who does your blood work—we’re not stigmatized and are treated like regular people. It’s just nonsense that we are stigmatized because we live with this disease.
STEPHANIE SMITH, 39
Ontario PRA
Operating room attendant
Living with HIV for 14 years
Why does CHIWOS matter to you?
Women are under-represented in HIV research, and in most studies where women are included, we’re treated like men, even though we have different needs. With CHIWOS, we hear the point of view of women—what we want, how we feel, how things affect us. We have different life experiences, so it’s important to hear the women’s side, in all its complexity.
I find the diversity of the positive women I interview astonishing—how they got HIV, what they’ve accomplished in their lives, how being HIV positive has made them stronger.
Also, I get to connect with some women who aren’t otherwise involved with the HIV community. Just because they don’t want to be out about their HIV status doesn’t mean they don’t want someone to talk to. It’s nice to sit and talk with a woman who’s going through the same thing.
What motivated you to become a PRA?
I got HIV from my partner at the time who had cheated on me with men. After my diagnosis in 2003, I wanted to use my skills and do something good with the situation.
I was already working in the healthcare field as a homecare worker. I told my boss, who knew I had HIV, to send me to the homes of HIV-positive people. I realized that as a peer, as someone who could relate, there was so much more I could offer those clients. Being a PRA seemed like a good opportunity for me to do more in my life as a person living with HIV.
When I met Dr. Mona Loutfy, the principal investigator who told me about a new project called CHIWOS, I was intrigued because there weren’t many studies out there specifically about women with HIV. I was one of the first PRAs to get involved: I did a test run of the survey and now I interview women living with HIV in Ontario.
What makes this work meaningful to you?
I know that it will help change things in the long run—policies, programs and, hopefully, the way healthcare professionals talk to women. I hope that it will help doctors ask the right questions about what women need. Take, for example, side effects and how HIV medications affect our bodies. Women are sometimes prescribed the same doses as men. A woman who weighs 120 pounds can be taking the same dose as a 300-pound man who is 6'4". What about the toxicity, the difference in side effects, the different ways that medications affect women’s bodies?
Has there been a standout moment?
I interviewed a woman in Ottawa who was just starting to turn her life around. She wanted to stop using drugs, become a better mom and go back to school. We met at a coffee house and the interview lasted three hours. She had never met an HIV-positive woman who was working, had her life together, had a good family life. She saw that I was dating and in a relationship. We sat there, drank coffee and had a really good conversation.
“Things can change,” I told her. “I make the HIV a little part of my life—it’s not my whole life.” She said she had never thought of it that way; she thought of her life as little and HIV as huge. When I explained that I saw it the opposite way, she was able to see things in a different light.
When we met a year later for a follow‑up interview, she was in college, had her own apartment and had stopped using. It made me feel like I helped someone improve her life by spending just three hours talking to her. This is what’s so good about community-based peer research—in addition to collecting important information, you get to connect and sometimes help people.
What does woman-centered care look like to you?
I recently changed family physicians. It’s so great to go to a clinic where my doctor and the nurses are women who understand my needs as a woman who has HIV. I can get everything—blood work, X-rays, ultrasounds—done at this one clinic. It’s so woman-centered compared to where I went to see my former family doctor who didn’t really understand the needs of an HIV-positive woman. Having woman-centered care has changed the whole experience of going to the doctor for me. Now I ask my doctor sensitive questions that I didn’t feel comfortable asking before.
What does MIWA (the meaningful involvement of women living with HIV) look like to you?
I think of Dr. Mona Loutfy, who is amazing at this. As a principal investigator, she treats us as though we’re at the same level as she is. She involves us from the beginning of the process so we can provide our expertise. We know what it’s like to live with HIV, so it’s meaningful to be involved like that from the beginning.
BRIGITTE, 55
Quebec PRA
Living with HIV for 33 years
Why does CHIWOS matter to you?
Twenty-two years ago I was living in an AIDS hospice. I had to put my daughter in foster care because I was dying. But, as you can see, I pulled through—effective antiretroviral treatment saved my life and turned everything around for me—and this greatly motivated me to advocate for the rights of HIV-positive women.
Now I don’t hesitate to share my experiences with others because I know it has a positive impact on other women living with HIV. It’s like we have a natural unspoken understanding of each other. This is why CHIWOS matters so much to me.
What motivated you to become a PRA?
I connected with CHIWOS via a CTN (Canadian HIV Trials Network) committee of people living with HIV that I was on. That committee reviewed and made recommendations on HIV-related research.
I fell in love with this research work from the get-go. I wholeheartedly embrace CHIWOS’ vision and mission of optimizing the health and well-being of women with HIV. As far as I know, there wasn’t any research of this kind happening when CHIWOS started. This was a first. I was, and still am, delighted to be part of it. It’s about time that people take into account the realities that women with HIV face!
What makes this work meaningful to you?
I have now conducted approximately 60 interviews with HIV-positive women in Quebec. Each woman has a unique story. My goal is to have an impact on the people I meet and help women tap into their strength.
At the end of their involvement in the research, women often say that even though there isn’t time to go into detail on many topics, it gives them an opportunity to talk. Their participation makes them feel useful and needed.
What does women-centred care look like to you?
Everything that has to do with women. It is important to address biological issues that are specific to women—such as pregnancy, menopause, PMS, menstruation—as well as women’s mental health issues and social issues. These all affect women’s overall health.
When you hear the term MIWA (the meaningful involvement of women living with HIV) what do you envision?
MIWA is very important to me because there are still many battles to fight for women after they receive an HIV diagnosis. It’s important to reassure women and help them integrate socially—for example, help them find employment. We are making progress, thanks to the involvement of people living with HIV. For example, U=U (undetectable=untransmittable) is a huge step forward. The fact that people with HIV who have an undetectable viral load don’t transmit HIV to their sex partners and can prevent transmission to an unborn baby is really changing things for people living with HIV.
Thanks to CHIWOS and its essential and indispensable research, women feel heard. It’s high time!
Women & HIV by the Numbers
Globally, women make up more than half of people living with HIV.
In Canada, 23% of people living with HIV are women. Black and Indigenous women are over-represented among women living with HIV in this country:
- 37% of women diagnosed with HIV in 2016 identified as Black.
- 36% identified as Aboriginal.
- 21% identified as White.
One large B.C. study, which analyzed the quality of care of 3,600 participants living with HIV, concluded that women generally receive “poorer quality of care” than men.
Data from CHIWOS reveal that gaps in care are real: About 1 in 3 women with HIV are lost to HIV care at some point following their diagnosis, with significant differences across different groups. For example, older women and Black women are more likely to be virally suppressed, whereas women who are younger, use illicit drugs, face food insecurity or have recently been incarcerated are less likely to be virally suppressed.