The BC People Living with HIV Stigma Index (often simply 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 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). To date, the HIV Stigma Index has been implemented in over fifty countries. HIV stigma has been identified as a priority area for PAN to address, and in 2015, we began the 3-year project 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 wellbeing
- 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. One peer researcher said:
“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.”
Initial Findings: The Stigma Picture in BC
PEOPLE: 181 interviews were completed
- Age range of participants represented all decades of adult life, with the majority being in the 30-59 range (71%)
- Gender Identity: 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.
PLACE: input was gathered in all regions of the province.
- Coastal: 40%
- Fraser: 22%
- Northern: 13%
- Island: 14%
- Interior: 8%
HIV AND OTHER HEALTH ISSUES
- More than half of participants have lived with HIV for more than 5 years (55%)
- 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.
For more information about the study process and initial findings, see the presentation from the 2017 PAN Fall Conference.
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 expect to begin this early in 2018.
We are also actively working with the Canadian People Living with HIV Stigma Index project to help guide implementation of the Index as it gets going in other provinces, beginning with Manitoba and Ontario.
We look forward to sharing more detailed information with member groups and community.
Overview of Process and Findings (Presentation, 2017): This presentation provides background on the project’s foundation development with GIPA focus, profile of survey participants.
Evaluation of the Planning Phase (Poster, 2016): this evaluation was developed to identify opinions of the planning phase of team members and to evaluate adherence to community-based research principles: community, capacity-building and collaboration.
The Importance of the Stigma Index (Video, 2016): Brief video (9 minutes) on the community response to stigma, the importance of peer-led approaches, and the 12 points explored in the Stigma Index tool.
For more information on this study, please contact PAN’s Stigma Index Project Manager, Tabitha Steager.
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.