In December 2015, YouthCO HIV & Hep C Society, Canadian Positive People Network Youth Caucus, and the HIV Disclosure Project collaborated in a survey for youth under 30 years old which focused on experiences of HIV disclosure. Hopefully, many of you were able to participate in this survey, which was designed by Muluba Habanyama and YouthCO, in collaboration with CPPN-RCPS and HIV Disclosure Project.
Earlier this month, Muluba was able to share the results at the Youth Unleashing Power conference in Victoria, British Columbia.
Although 22 surveys were received through an anonymous online questionnaire, only 12 of the surveys were completed in full and used in the data analysis. Surveys were completed primarily by youth living in Ontario and British Columbia. The opportunity to present the results from the survey to a broader group of youth at the conference confirmed that the key topics discussed in the survey were shared. We asked youth about experiences they have had when it comes to disclosing their HIV status, and what ideas they had for a workshop on youth HIV disclosure.
"Stigma, fear and loss of control over ones' confidential information as well as concerns for safety issues and backlash remain as obstacles to reaching a level of acceptance from the general public."
The major themes were strategies for disclosing HIV, education of people who are HIV-negative, and acceptance. In addition, youth who completed the survey consistently discussed stigma, fear and concern about loss of control over sharing their HIV status. We have a (fairly) short report that goes into more depth about the survey available online here.
Muluba's (left) presentation at the Youth Unleashing Power conference which was hosted by The Vancouver Island Persons Living with HIV/AIDS Society, was a huge success as she described the experience and interest shown in pursuing this topic in further depth:
"People were so engaged and we went over time talking about disclosure. It was an emotional and powerful discussion and really proved the need for this. There was interest in involvement in this and delving deeper into disclosure."
In these conversations and in the surveys, youth shared that disclosure is complicated! Stigma, fear and loss of control over ones' confidential information as well as concerns for safety issues and backlash remain as obstacles to reaching a level of acceptance from the general public. Youth identified the need to not only educate youth to enhance their confidence and self esteem, but also to educate the public. Many youth reflected on the challenges of playing an educator role in the moments following disclosing their HIV status, and believed greater general education and awareness among HIV-negative people would ensure education could be a shared responsibility. The attendees agreed that more support is needed for youth to cope with stigma and discrimination received when they do take the risk of disclosing their status.
Youth identified ways in which disclosure would ultimately lead to lower transmission rates of HIV, an increase in youth getting tested for HIV and how the need to have HIV become part of everyday conversation would invoke understanding, acceptance and support from peers and the general public.
YouthCO HIV & Hep C Society, Canadian Positive People's Network Youth Caucus, and the HIV Disclosure Project look forward to continuing our collaborations with Muluba and other youth living with HIV in Canada! Together, we’ll work to create space for youth-driven work to challenge the stigma, legal injustices, and ignorance that shape youth experiences of HIV non-disclosure. To get involved, contact
This article is a collaborative effort of YouthCO HIV & Hep C Society, Canadian Positive People Network Youth Caucus, and the HIV Disclosure Project.