The BC People Living with HIV (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 HIV Stigma Index initiative, it will be the first ever community-based research (CBR) study in British Columbia to document experiences of stigma and discrimination from the perspective of people living with HIV.
This action-oriented study will translate community experiences into language decision-makers can effectively use; build a shared agenda to influence programs, services and policies; and positively impact individuals involved. The HIV Stigma Index study is both a process of building partnerships and capacity and an action-based research tool (building on a quantitative & qualitative questionnaire).
Designed by and for people living with HIV, and led by people living with HIV, this study will 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 and AIDS (GIPA). To date, the HIV Stigma Index has been implemented in over fifty countries (see www.stigmaindex.org for the global implementation and outcomes).
At PAN’s 2012 Fall Meetings in both the Positive Forum and at the Executive Directors’ Summit, HIV stigma was identified as a priority area for PAN to address. In 2013, stigma was again identified as a priority in the CBR Collaborative priority setting process. Also in 2013, the CIHR CBR Collaborative Centre (a Program of REACH) began developmental work on the HIV Stigma Index for implementation in Canada, with British Columbia being the first to begin work on the project in early 2015.
This 3-year research project in BC is led by a team of seven experienced leaders who are living with HIV, along with PAN Executive Director Jennifer Evin Jones and academic co-principal investigator Dr. Catherine Worthington, Dr. Melanie Rusch, and PAN’s Director of Evaluation and CBR, Janice Duddy.
Objectives of the Stigma Index study in BC
The objectives of this initiative are as follows:
- 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
The HIV Stigma Index study is a 3-year project. The study aims to enlist 4-6 peer researchers to hold 200-250 quantitative interviews of people living with HIV ensuring inclusion of priority populations (i.e. MSM, indigenous people, etc), and a smaller number of qualitative interviews in the final phase of the project.
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.