The BC People Living with HIV Stigma Index Project

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

 

Research Process

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.”

 

Click on image to see presentation from Fall 2017.

 

 

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.

 

Next Steps

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.

 

Resources

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.

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  • The Research and Evaluation work at Pacific AIDS Network is funded through a partnership with the CIHR CBR Collaborative, a program of REACH 2.0.  REACH 2.0 is “a nation-wide, innovative, virtual laboratory for intervention research, participatory evaluation, and applied program science in HIV, hepatitis C, and other sexually transmitted and bloodborne infections.” The PAN Research and… Read more »

  • “Community-based research is research that is conducted with and for, not on, members of a community.” (Kerry Strand. 2003. Community-Based Research and Higher Education: Principles and Practices, p. xxi) Community-based research (CBR) is a methodological practice that places community partnerships at the forefront. promote an interdisciplinary framework that recognizes the multiple social, economic, political and health… Read more »

  • PAN’s Community-Based Research (CBR) program facilitates and supports community-based research initiatives and partnerships to address HIV and HCV  in British Columbia and across Canada.  This program is possible thanks to our partnership with and funding from the CIHR Centre for REACH in HIV/AIDS. Through CBR  we work to help foster CBR in the province by linking… Read more »

  • One of the key pieces in our Training and Leadership program is the Positive Leadership  Development Institute (PLDI). The purpose of PLDI is to support people living with HIV/AIDS to realize their leadership potential and increase their capacity to participate meaningfully in community life. PLDI features three modules to engage people at various stages of… Read more »

  • As part of our Training and Leadership program, webinar topics are  developed with community input gathered at our annual meeting with people from across BC, through our annual Members and Stakeholder Surveys, and by following public health trends and emerging issues. Our goal is to provide member organizations and the community information they can use… Read more »

  • PAN works to facilitate, support and grow participatory evaluation initiatives and associated partnerships that address HIV, HCV and and related issues in British Columbia and across Canada.  This work is made possible through our partnership with and funding from the CIHR Centre for REACH in HIV/AIDS. PAN works within a participatory and community-based evaluation framework: we work to build… Read more »

  • Each year our Fall Conference focuses on key issues in HIV and HCV work in order to educate, support and connect people working across BC. The annual meeting, Executive Directors’ Summit and People Living with HIV forum also identify and prioritize advocacy issues for PAN to address.  The 2017 event will be October 25 and… Read more »

  • The Positive Leadership Development Institute (PLDI) supports people who are living with HIV to realize their leadership potential and increase their capacity to participate meaningfully in community life. Developed in partnership with the Ontario AIDS Network (OAN), these learning modules have supported many people to go on to pursue paid and volunteer work with new… Read more »

  • Going on a weekend training with peers who have HIV can be life-changing. People arrive to meet other attendees and often feel nervous and uncertain about what to expect and how they will do. When the weekend program is finished, people  don’t want to leave. But what does happen when people leave? How does PLDI training… Read more »

  • The Positive Leadership Development Institute News blog covers information about the multi-module PLDI training as well as information about PLDI grads. Some have gone on to work in the HIV sector as researchers, educators, support workers, and more. Read stories on what it’s like to work in community-based research work from someone with lived experience; read… Read more »

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