Working Towards Better Supports: Lessons from the BC People Living with HIV Stigma Index

We all know that having support (and having access to supports) is important. What support looks like, however, is unique for everyone. Many of us rely on friends, family and loved ones for support when things are difficult, to celebrate our successes, and to show up for us when needed.

The BC People Living with HIV Stigma Index is a community-based research study, linked to the international People Living with HIV Stigma Index. It is designed by and for people living with HIV, with people living with HIV (PLHIV) leading the charge. This study explores PLHIV’s experiences of stigma and supports the development of stigma reduction initiatives. In BC, the research team completed 176 interviews with PLHIV as part of this study.

Within the BC People Living with HIV Stigma Index, we worked to consider support in our analysis, looking at questions in the survey about social support. Guided by the priorities of our study team and suggested focuses at our 2019 Deliberative Dialogue event, it was important for us to focus on strengths and identify what supports people had in their lives. Having supports in many areas of our lives can help us grow and flourish.

Colt Burrows, a member of the BC People Living with HIV Stigma Index study team and former Peer Research Associate on the study (read Colt’s story on The Positive Effect) offered these reflections on support within the study:

When I reflect upon my time as a Peer Researcher with the BC Stigma Index, the notion of ‘support’ has always been grounded in the community—the community of academics providing professional guidance and new career opportunities; the community of peer researchers lending emotional support after a tough interview; and the community of people living with HIV that inspire me to be a champion for those impacted by this disease. For a lot of us engaged in this field, we often wear many hats. Sometimes we are participants providing data on our experiences of HIV-related stigma and sometimes we are researchers trying to center our own lived experience within the projects we implement.

If you’ve read a blog on The Positive Effect, you’ll know that this topic has been touched on before. In another blog, Lynne, a Peer Researcher with the Stigma Index study in Ontario, shared her thoughts on what “social support” looked like for many of the participants in Ontario and why support is so essential to the emotional, physical and mental wellbeing of people living with HIV. After interviewing many people living with HIV in Ontario, Lynne was surprised to learn that while sources of support could vary from person to person, the impact of that support was relatively the same. So whether people received social support from a friend, a family member, a pet or a case manager, the positive impact of that support was similar. Lynne shared,

And one of the things that always surprised me—I kind of always had it in my head that a friend is better than a support worker, or a family member is better than a case manager. And what I tended to find when people were answering that, that wasn’t necessarily true. There aren’t necessarily levels of useful support. To most people, support is support.

What does support look like?

In the BC People Living with HIV Stigma Index, we asked participants several questions about the different kinds of support they have in their lives. 91% of participants reported that some, most or all of the time they had “someone to listen to [them] when [they] need[ed] to talk,” reflecting emotional and informational support in their lives. 77% reported that some, most or all of the time they had someone to “take [them] to the doctor if [they] need[ed], suggesting many participants reported having tangible supports in their lives.

Why is support important? Or why does this matter?

As we note in our Stigma Reduction Intervention Planning Guide, support can function as a protective factor for stigma: “There are things that can prevent or lessen negative reactions or prevent stigma from happening in the first place, [examples] include social support” (Steinberg, 2020). It is crucial that we all work towards ensuring that people feel supported and have access to the supports they need. As Colt explains:

What's clear to me is that regardless of the roles I've played within the BC Stigma Index, peer support has been a critical component to my success. By creating the space to be vulnerable and have difficult conversations about what it means to experience HIV-related stigma, it enables our community to be empowered. I have viewed these conversations as a personal process for healing and my journey with the BC Stigma Index has really cemented my desire to continue talking to other people living with HIV about how we collectively can heal and process these experiences in a positive way.

Supporting our Peer Research Associates

We also wanted to expand our consideration of what supports may look like not only for participants in research, but also for Peer Research Associates who are actively engaged in/with and leading this research. As part of the BC People Living with HIV Stigma Index, we interviewed the six Peer Research Associates (PRAs) that supported data collection about their experiences on the project. Recommendations and reflections from these experiences were captured in PAN’s Checklist: What needs to be in place to provide adequate support to peer researchers?

Some of the things we think are most important are to: ‍

• ensure necessary support resources are in place throughout the research project;
• maximize capacity building and supporting peer researchers’ future goals; and
• build on peer researchers’strengths.

Sylvain, who was a PRA with the Stigma Index study in Quebec, in another blog on The Positive Effect, reflected on his experience of being apart of the study, and how it impacted him personally to hear about people’s access to (or lack of) social supports. He said that speaking with participants sometimes brought up unpleasant feelings,

but there [were] also bursts of laughter and joyful memories that people gladly [shared].

Community members, including people living with HIV, have expressed a strong desire and push to think more deeply about how peer researchers are supported in their work and for research teams to do better in providing these supports. We encourage you to check out the Checklist and to keep this conversation going at the tables that you sit at and in your communities.

What’s next?

The BC study team will continue to build upon our understanding of what supports have an impact on people living with HIV through the qualitative study, People with Lived Experiences’ Strengths in the Face of Stigma. This study will explore what makes services work well for people living with HIV and what helps build upon their strengths and resilience. We look forward to sharing more as this work moves forward. Keep updated on PAN’s website.

This blog post was contributed by Madeline Gallard, Paul Kerber and the BC People Living with HIV Stigma Index study team, in collaboration with colleagues at PAN and REACH Nexus.