The Canadian HIV Stigma Index Project: Ontario Implementation

Initiative Summary

This project 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, to translate the community experiences into language that can inform decision-makers, to energize participation, and to influence programs, services and policies that can help mitigate and overcome the experiences of stigma. Our approach to implementation is grounded in the experiences of people living with HIV at all stages of research production and dissemination. Fifteen Peer Researchers (PRAs) were trained to conducted 724 interviews in five regions of Ontario and continue to be meaningfully engaged wherever possible. Data analysis is ongoing and examines the breadth of HIV stigma across regions, populations and contexts. A second phase of quantitative data collection will be conducted online to gain deeper insight into stigma and its impact. We continue to produce knowledge transfer and exchange (KTE) initiatives as we collect data in order to highlight experiences of HIV stigma across lifespan, contexts and systems. These activities include local and national presentations and educational and social media campaigns.

Initiative Objectives and Goals

This project implements a well-proven international instrument supplemented with validated measures to describe and map out HIV stigma in Canada. The Stigma Index is a global project developed by and for people living with HIV. It is both a Community-Based Research (CBR) process (building partnerships and capacity) and an action-based research tool. The purpose of the Stigma Index is to document experiences of stigma from the perspective of people living with HIV, to translate the community experiences into language that can inform decision-makers, to energize participation, and to influence programs, services and policies that can help mitigate and overcome the experiences of stigma.

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. HIV Stigma Index-Ontario Implementation is critical 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

Peers have been involved at every level of decision-making and implementation of this project including those who played a crucial role in the formative stages of this study on both national and provincial steering committees. In addition, Peer Researcher Associates (PRAs) were hired and trained to support participant recruitment, data collection, and help with the analysis process. In early 2020, several online training sessions focused on analysis and interpretation of quantitative data for PRAs were held. There are plans for PRAs that choose to do so to be selected and trained as KTE champions to disseminate data across the province.

Key performance indicators

Primary target audience

People living with HIV, policy makers, front line organizations, clinicians

Start Date
April 1, 2017
-
March 2022
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Strategic marketing and support tactics

Website, social networks, email campaign, posters (online and in print).

RESULTS

The results from the HIV Stigma Index—Ontario Implementation will have a collective impact that generates conversation through the production of continuous, innovative KTE activities. The POZ Effect online conference is an example of Stigma Index KTE innovation. Its purpose was to display the complexity of HIV stigma across continents, shining a light on how it is enacted, perceived, experienced and overcome. Consistent with the goal for all participants to be able to share and learn from each other, HIV Stigma Index results from Ontario have been presented at a number of organizations and events, including the AIDS Bureau, University of Toronto Rehabilitation Science Interprofessional Education series, Gay Men’s Health Summit for the Gay Men's Sexual Health Alliance (GMSH), Casey House Mental Health Series, Canadian Society for HIV Research (CAHR) 2020, U of T Faculty of Medical Science and the Public Health Agency of Canada (PHAC). The HIV Stigma Index—Ontario Implementation strives to develop and push out KTE activities even as data is collected and analyzed, not waiting for one phase to finish in order to engage those around us in the fight against HIV stigma. Our action-oriented determination will continue to drive our success.

Results

The results from the HIV Stigma Index—Ontario Implementation will have a collective impact that generates conversation through the production of continuous, innovative KTE activities. The POZ Effect online conference is an example of Stigma Index KTE innovation. Its purpose was to display the complexity of HIV stigma across continents, shining a light on how it is enacted, perceived, experienced and overcome. Consistent with the goal for all participants to be able to share and learn from each other, HIV Stigma Index results from Ontario have been presented at a number of organizations and events, including the AIDS Bureau, University of Toronto Rehabilitation Science Interprofessional Education series, Gay Men’s Health Summit for the Gay Men's Sexual Health Alliance (GMSH), Casey House Mental Health Series, Canadian Society for HIV Research (CAHR) 2020, U of T Faculty of Medical Science and the Public Health Agency of Canada (PHAC). The HIV Stigma Index—Ontario Implementation strives to develop and push out KTE activities even as data is collected and analyzed, not waiting for one phase to finish in order to engage those around us in the fight against HIV stigma. Our action-oriented determination will continue to drive our success.

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