The BC People Living with HIV Stigma Index (often called the Stigma Index) is a dynamic research project in British Columbia born out of a community-identified need to turn the tide against persistent HIV stigma and discrimination. Linked to the international People Living with HIV Stigma Index initiative, it is the first community-based research (CBR) study in British Columbia to document experiences of stigma and discrimination from the perspective of people living with HIV.
Designed by and for people living with HIV, and led by people living with HIV (PLHIV), the study data will provide information to inform better evidence-based responses to HIV and related issues, and will empower participants to have an active voice in anti-stigma and discrimination reduction initiatives.
Background on the international People Living with HIV Stigma Index
In 2006, four founding partners – the Global Network of People Living with HIV (GNP+), the International Community of Women Living with HIV (ICW), the International Planned Parenthood Federation (IPPF), and the United Nations Joint Programme on HIV/AIDS (UNAIDS) – developed the HIV Stigma Index to create a credible, action-based research tool based on the founding principle of the Greater Involvement of People Living with HIV (GIPA). Since its launch in 2008, the HIV Stigma Index has been implemented in over one hundred countries. Because HIV stigma has been identified as a priority area for PAN to address, we began in 2015 with the Stigma Index tool in BC, the first province in the country to do so.
Objectives of the People Living with HIV Stigma Index in BC
The objectives of this initiative are to strengthen the capacity of PLHIV involved in the project and to improve the lives of PLHIV in BC. Specifically, we aim to:
- Support people living with HIV to be Stigma Index leaders & build capacity for PLHIV to participate in research planning and partnership development
- Broaden our understanding of HIV stigma and examine the potential resilience factors that may buffer/reduce negative effects on health & social well-being
- Inform provincial/local strategies to reduce stigma and strengthen social networks
- Improve programs to better meet the needs of people living with HIV and increase access to and uptake of services
Six Peer Research Associates (PRAs) used the Stigma Index survey tool (2016-2017) to gather information about experiences across the province. The side-by-side process of peer to peer communication proved powerful. Having researchers who are able to openly disclose their HIV status to participants was an important factor in building trust and confidence in the Stigma Index survey situation. It also increased the opportunities to illustrate the stories of stigma and discrimination.
“I was amazed at how [peers] opened up to me so freely, as if they needed to just voice things that they held inside for so long. Many had low self-esteem and struggled with disclosure due to the stigma attached to HIV.” (Peer researcher)
Initial Findings: The Stigma Picture in BC
We ended data gathering with 176 interviews for analysis. Researchers met with people in all regions in BC, and the age range of participants represented all decades of adult life, with the majority being in the 30-59 range (71%). More than half of the participants were male (58%). Women accounted for 39% of participants, and trans folks were 1%. “Other” (1%) and “Missing” (1%) were also noted.
HIV was not the only health issue for participants. Almost half of participants (49%) said they live with mental health issues; over a quarter of the participants (27%) said they are co-infected with hepatitis C (HCV), and 16% have been treated for HCV.
Moving the Research to Action
In addition to a detailed analysis of the quantitative data, we will be conducting in-depth, qualitative interviews to fill gaps in the survey data and gain a deeper understanding of the complexities of HIV-related stigma in BC.
We are also actively working with the Canadian People Living with HIV Stigma Index project to help guide implementation of the Index as it is used in other provinces, including Ontario, Manitoba, Saskatchewan, Quebec, and in the Atlantic.
We have shared data at peer-to-peer events, with policy makers and health authority representatives in different regions; we have focused on stigma’s relationship to sexual health and to delivering health education. Please see below for a list of resources.
Knowledge Translation and Resources
Island Health STOP Team Presentation: This presentation includes experiences of stigma in healthcare and social services.
As a result of interviews with the peer research associates, we developed a checklist of what needs to be in place to provide adequate support to peer researchers.
We presented stigma data at the 2019 Educators’ Forum, which offers specialized training for those working with folks in Indigenous communities.
We shared findings at various community meetings and events with PLHIV and policy makers, in different regions. This included the Interior, Vancouver Island, the Lower Mainland, and with members from all regions at the PAN Fall Conference.
We produced a postcard that captured some top level findings.
From Darkness to Light: Bringing HIV related Stigma to the Fore in British Columbia (Poster at Canadian Association for HIV Research (CAHR) conference)
Confronting Stigma and Discrimination: Results from the BC People Living with HIV Stigma Index (Poster at Canadian Association for HIV Research (CAHR) conference)
Overview of Process and Findings: (slides)
The BC People Living with HIV Stigma Index (Ignite-style webinar on-demand)
The BC People Living with HIV Stigma Index Project:Planning Phase Evaluation) (CAHR Conference poster)
For more information on this study, please contact PAN’s Director of Evaluation and Community-Based Research, Janice.
The BC People Living with HIV Stigma Index is made possible due to the generous contributions of the Vancouver Foundation, the CIHR Centre for REACH in HIV/AIDS, the CIHR CBR Collaborative (a program of REACH), and the Canadian Institutes for Health Research.