Henry Luyombya;research coordinator for the CHAMP study at the Committee for Accessible AIDS Treatment. Photo Credit: Yamri Taddese , Global News
Yamri Taddese, Global News : Wednesday, March 21, 2012 5:38 PM
TORONTO - One in almost 100 Torontonians is HIV positive, but most Toronto residents have never met a person who lives with HIV.
It could be because those who live with the disease never reveal their status.
For many, saying you are HIV positive can be like “sticking your neck out to be cut off,” said Dr. Alan Li, the co-principal investigator of a new study that aims to reduce stigma associated with the disease.
The CHAMP study will use Acceptance Commitment Therapy (ACT) to teach participants to be mindful of their perceptions toward HIV and acknowledging those perceptions.
The study is currently recruiting religious leaders, health and settlement workers as well as members of the media from the GTA’s immigrant communities, who are disproportionately affected by HIV.
While accounting for only 1% of the Canadian population, immigrants and refugees make up 20% of HIV infections each year. Forty percent of HIV-positive immigrants contracted the virus after their arrival to Canada.
The CHAMP study is a response to a previous study by the Committee for Accessible AIDS Treatment which found that HIV-related stigma and lack of community leaders to speak about the disease create a barrier for prevention efforts.
Dr. Li says the invisibility of the disease “breeds more stigma and more self-stigma.”
“But it doesn’t mean stigma always comes from hate, it’s about not having flexibility,” he said
Participants, including those who live with HIV, will undergo a series of trainings, which involves learning about issues around HIV and taking the first step toward acceptance by recognizing their own perceptions of the disease.
At the core of Acceptance Commitment Therapy is mindfulness, says Dr. Kelly Wilson, a Professor of Psychology at the University of Mississippi who is one of the co-founders of this therapy and has written extensively on the treatment.
“Mindfulness is opening up and allowing whatever arises with equanimity, with appreciation,” he said. “It’s about teaching people to change their relationship with their thoughts and emotions.”
When it comes to stigma, Dr. Wilson says people either cling on their beliefs or they deny that they have them.
“The harder you fight [the thought], the stronger it gets. The thought is not the enemy.”
The key, he added, is to acknowledge those thoughts “kindly” and act not upon them but upon one’s core values.
“Stigma is a product of a certain kind of history. It can be held lightly and then you can pick your values.
What if you had your thoughts instead of your thoughts having you?”
Acceptance Commitment Therapy has been used to treat anxiety, depression, eating disorder and chronic pain.
The CHAMP study will combine this therapy with another intervention which aims to build participants’ ability to take on advocacy roles on issues that are related to HIV. These include fighting homophobia, racism, poverty and social exclusion.
“We know these roles are not easy, otherwise everyone would have been doing it already,” said Dr. Li. “But part of breaking new ground is to challenge our comfort zone.”
Henry Luyombya, the CHAMP study coordinator, adds that this challenge is what makes the study important.
“The fact that it’s been partly hard to get participants from particular communities explains the urgency of our work,” he said.
Luyombya, who is HIV-positive, says the disease is a huge taboo in many communities.
“I can talk about my lived experience, but not many people can,” he said.
He added that revealing your status could mean losing job opportunities, facing discrimination from health care workers and other service providers.
“But the issue isn’t about assigning blame, that doesn’t get us very far. It’s about understanding the driving sources that make it difficult [to address the problem],” said Dr. Li.
The CHAMP training sessions will take place between April and May. The researchers will then check in with the participants to see if they are getting involved in any HIV-related interventions.
Several surveys and questionnaires will also be used to gauge the success of the study.
Global News
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