Guest Blog Post by Janet Madsen, Positive Women’s Network
I recently went to a café scientifique (a panel of speakers and discussion) called “Employing Peer-Based Research Associates: Are We Providing Enough Support?” Five speakers presented their experiences on peer-based research projects. Three self-disclosed peer research associates – Chuck, Jonathan, and Shelly – and two lead investigators – Dr. Angela Kaida and Surita Parashar – were on the panel. The discussion covered a lot of ground, from individual motivation for peer-based work to policy and guideline development.
An HIV diagnosis means a shift in direction for most people. Even those who live in highly affected populations like the gay community have personal changes to absorb. Thankfully for those in the big city, there are good doctors and social service supports out there to help with the transition. (The speakers work in the city so didn’t address being a peer research associate in an outlying or less urban area, which I’m sure has additional challenges).
Once people have regained some balance in living with HIV, they often want to give back to the community that’s supported them. Chuck said this is why he wanted to get involved. He feels one of the strengths of community-based research is the many ways people can be involved. One person will thrive on an advisory committee, another as an interviewer or group facilitator, and still another at presenting the research results. There are lots of ways to give back and make a difference.
Building a Project
Dr. Angela Kaida is one of the principal investigators in CHIWOS: the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study. CHIWOS is looking at how women with HIV in Canada access health care and social services and where improvements can be made. Angela said positive women play a central part in the work, for “women are underrepresented in research and women are underrepresented in leading research.”
CHIWOS has a team of peer research associates to do one-on-one in-depth interviews. Angela spoke about barriers women face in even considering getting involved as a peer research associate, including how far a woman has disclosed her HIV status in her world, her level of job skills, whether she is actively using drugs, whether she has basic supports such as housing and food security to enable her to dedicate time to the work. For peer research associates in community-based research, Angela said the bulk of the work is in helping people learn to see themselves differently. She talked about the transition from individual with HIV to “steward of research.”
Jonathan talked about how fast things can change when getting involved in peer research. He went from being a bartender to being a research associate in a year. He’s learned some important lessons. Peer research associates “don’t have to know everything,” he pointed out, acknowledging they can feel that pressure. There’s also a real need to develop standards of employment for peer research associates that address differences in what projects pay, how people get paid, and benefits of the job.
This changing of roles prompted a lot of discussion. When individuals shift from community members to community representatives in the role of peer research associate, they must become more aware of the impact of their actions, as people will see them differently. And if peer research associates are involved in various community projects, each requiring confidentiality, where do they go to debrief? Or what happens if peer research associates talk about their personal viewpoints and possibly bias research or someone’s access to care and support?
Everyone acknowledged there is fine-tuning to do. Straddling personal and professional lives is difficult. Peer research associates will hear other people’s stories. Surita, who was the lead in a photo voice project called “The Way I See It,” described the process of interviewing people with trauma like “pulling off scabs” for peers with their own histories. She stressed that researchers can’t expect peers to absorb this as “just part of the job.”
All three peer research associates emphasized the need to build outside emotional support into projects. Chuck suggested knowing who to go to when you need an ear to listen before you start a project or job.
Shelly talked about challenges in figuring out the balance between personal and professional support and summed up with three points: support, boundaries, and peer crisis. She acknowledged her “personal lens,” then talked about personal and professional differences. She said working in the HIV community as a paid staff person meant changes to her relationship to supports in the community. Figuring out how to get support when needed – and it will be needed – is part of the job.
If peer research associates are in crisis, they can’t always be honest about it, because they feel they can’t take off their “work hat.” This is why it’s so important to have stuff in place before a crisis hits. Shelly was very clear that peer research associates should be willing to work on themselves. “Going through mental health work is part of a peer research associate’s responsibility. It’s ethical,” she said.
Everyone involved in peer research must be aware that all parts of it require a lot of thought. What do people need to do before, during, and after their involvement to stay healthy and get help when they need it? How do we support the work of peer researchers without asking unreasonable things of them? No one should be expected to be on call all the time, but it can feel that way for some. How do we create a balance between individual and worker? What kind of standards are needed to support the research and the researchers? Perfect answers aren’t there yet. But as shown by the forum, the community is committed to finding them.
This post first appeared in The Positive Side, the quarterly newsletter published by the Positive Women’s Network. The Cafe Scientifique forum ““Employing Peer-Based Research Associates: Are We Providing Enough Support?” was organized by the Positive Living Society of BC, visit their CBR website here.