The HIV Stigma Index is a community-led, multi-site, community-based research (CBR) study. Its purpose is to document experiences of stigma from the perspective of people living with HIV, and to translate these community experiences into language that can inform decision-makers and better support programs, services and policies in mitigating the impacts of stigma.
With the Ontario HIV Stigma Index, our approach to implementation is grounded in the meaningful engagement of people living with HIV at all stages of research production and dissemination. In the first phase of quantitative data collection, fifteen Peer Research Associates (PRAs) were trained and conducted 724 interviews in five regions of Ontario. A second phase of quantitative data collection conducted online in early 2021 to gain deeper insight into stigma and its impact.
Our REACH Nexus regional research team conducts data analysis as an ongoing process to examine the breadth of HIV stigma-related experiences across regions, populations and contexts. Our team continues to plan and develop innovative knowledge transfer and exchange (KTE) products and initiatives—including local and national presentations and educational campaigns—and continues to collaborate and share research findings on The Positive Effect online social platform. As a facts-based movement focusing on the lived experience of people living with HIV, The Positive Effect is an ideal venue in which to showcase the results of the Stigma Index.
To learn more about some of our findings to date and our approach to peer-centered research, watch the video presentation that we developed for several AIDS service organizations in the Greater Toronto Area.
Initiative Objectives and Goals
By describing and mapping out HIV stigma in Canada, the Stigma Index aims to:
- better understand the social determinants of HIV stigma;
- map out HIV stigma across lifespans, contexts and social institutions; and
- mobilize local and national actionable solutions to support people living with HIV and their affected communities.
The Role of this Initiative to End the HIV Epidemic
HIV stigma continues to act as a profound stressor in the lives of people living with HIV, negatively affecting their health and wellbeing. REACH has led the implementation of the Stigma Index in Ontario, just as we have in other regions across Canada, to produce contextualized local data to support evidence-based practice, policy and decision-making to improve the lives of people with HIV.
Meaningful Engagement with People with Lived Experience
People living with HIV have been involved at every level of decision-making and every stage of implementing this project, and many have played a critical role in this study’s formative stages on both national and provincial steering committees. In addition, PRAs were hired and trained to support participant recruitment, data collection and analysis, and knowledge translation activities.
In early 2020, PRAs from Ontario participated in several online training sessions focused on the analysis and interpretation of quantitative data. A second training opportunity in 2021 further built their skills in quantitative analysis, while also empowering them to incorporate data storytelling approaches in KTE efforts. The training engaged a selected number of PRAs to participate in an eight-week online pilot KTE training to help champion and disseminate stigma-related research findings across the province.
Primary target audience
People living with HIV, policy makers, front line organizations, clinicians
Strategic marketing and support tactics
Website, social networks, email campaigns, podcasts, communities of practice and posters (online and in print).
The results from Ontario’s implementation of the HIV Stigma Index will help generate conversation through the production of continuous, innovative KTE activities and products. The Positive Effect online social platform is one example of Stigma Index KTE innovation. Its purpose is to illustrate the complexity of HIV stigma across regions, shining a light on how it is enacted, perceived, experienced and overcome.
With the goal of sharing information to enhance learning and greater awareness, results from Ontario’s implementation of the HIV Stigma have been shared at a number of organizations and events, including with the AIDS Bureau, the University of Toronto Rehabilitation Science Interprofessional Education series, the Gay Men’s Health Summit for the Gay Men's Sexual Health Alliance (GMSH), Casey House’s Mental Health Series, the Canadian Association for HIV Research (CAHR) conferences, the University of Toronto's Faculty of Medical Science and the Public Health Agency of Canada (PHAC).
The Ontario research team continues to work to develop and share KTE activities even as new data is collected and analyzed, working collectively to address and eliminate HIV stigma. Our action-oriented determination will continue to drive this project’s success.
Check out the Ontario HIV Stigma Index team’s latest paper on BMC Public Health, titled, Impact of Experienced HIV Stigma on Health is Mediated by Internalized Stigma and Depression: Results from the People Living with HIV Stigma Index in Ontario.
"But I also learn from the women after hearing their stories. I put them into practice. ‘Cause they teach me. I teach them. They learn from me." —Valérie, a BSC Collaborative member