Stigma (stig∙ma): noun: attitudes and beliefs that lead people to reject, avoid, or fear those they perceive as being different.
Stigma is one of the biggest challenges for people living with HIV and one of the largest barriers to HIV prevention, treatment, care and support.
In an effort to address stigma, Nine Circles and the Manitoba HIV Program are embarking on multiple initiatives over the next few years. The largest is a community-based research project with the University of Manitoba– HIV Stigma and Discrimination in Manitoba— which aims to better understand and positively address the experiences people have with HIV-related stigma locally.
Stop Stigma Forum
As part of the first phase of that project, a Stop Stigma Forum was held in April of 2017. The forum brought together people living with HIV, service providers, researchers and policy makers to exchange knowledge and prioritize issues most important to people living with HIV.
Here’s a summary of the key points that were brought forward at the forum. You can also read the full stigma forum report.
- When participants thought about HIV-related stigma and discrimination in Manitoba, the top three things that came to mind were:
- The lack of education and knowledge of HIV, especially on ways of transmission and effect on life span. (e.g. “HIV is a ‘gay’ disease”; “HIV does not equal to death”; “Let’s talk about HIV as a chronic disease”).
- The criminalization for non-disclosure to sexual partners. (e.g. “Criminalization! Severe punishment for not-disclosure. Why?”)
- Effect of HIV-stigma and discrimination on families. (e.g. “Protect my family (child) so they don’t face the discrimination and stigma. I do not want them treated differently because of my status.”)
- When asked about the effects of experiences of stigma and discrimination on individuals and communities, participants identified two types:
- Immediate effects: including isolation, destruction of social/community networks, delaying access to health care
- Long-term effects: including low self-esteem, addiction problems and feelings of disempowerment. (e.g. “you lost voice/decision making ability, others consider you disqualified to speak”)
- When asked what actions related to reducing stigma and discrimination would make the most difference to people living with HIV in Manitoba, participants suggested the following:
- Educate health care providers (including physicians, nurses, health care aides, social workers) as well as families and younger generation (e.g. “show people anyone could be affected and it is not a death sentence”; “HIV has no face/sex”; “rewrite HIV 101”)
- Normalize testing (e.g. “change the message– don’t just test the ‘risk’ groups, EVERYONE needs to be tested”)
- Change legislation and policy (There needs to be a change to the legal system to avoid criminalization and to protect the rights of the HIV positive population.)
- Increase peer support and other support programs (e.g. “peer providers as part of care and education”; “…support for people dealing with CFS, more support for positive parents [like] childcare for meetings and appointments”; “sharing circles”)
- Advocate (We need to use media, social networks to raise the awareness of HIV)
The forum was valuable, because it gave people an opportunity to engage in meaningful discussions that will guide and support the HIV Stigma and Discrimination in Manitoba project going forward.
Interviews & Questionnaire
The second phase of the study is in progress now, as peer research assistants interview people living with HIV and complete a questionnaire about stigma, discrimination and more. There has been a good response to recruitment thus far, but because this is a pilot study, the research team wants to ensure diverse demographics are represented. They are therefore shifting focus, and are specifically seeking those who are:
- recently diagnosed with HIV
- new to Canada
- under 40
Participants must be over 18, HIV positive for at least 6 months and live within the Winnipeg, Prairie Mountain or Interlake-Eastern Manitoba health regions. Find out more information or get involved.