The Living Well
A unique coalition promotes positive mental health among HIV/AIDS survivors
It has been 25 years since the first case of HIV/AIDS was reported in Canada. In that time, more than 17,000 people have been diagnosed with the disease in Toronto alone. An HIV diagnosis was once a death sentence, but the advent of effective antiretroviral therapies in 1996 has meant that people are now living with HIV/AIDS, not just dying from it.
But living with AIDS often means living with a profound sense of isolation, financial challenges, declining health and feelings of depression. "HIV makes you feel separated from the world," says Randall, an HIV survivor. "There are so many things you can't participate in and it makes it very hard to meet people and socialize. People think of you as a pariah."
In 1999, after noticing an increase in depression among HIV+ individuals, the AIDS Committee of Toronto (ACT) convened a meeting of community service and health care providers to discuss a possible collective response. The result was the Coalition on HIV and Mental Health, a groundbreaking initiative that taps into the resources and knowledge of ACT, Family Service Association of Toronto, Mount Sinai Hospital, Sunnybrook Hospital and Casey House Hospice to provide support groups for HIV+ individuals.
"There's nothing like it anywhere in the city, where a group of host agencies commit to working across agency boundaries to deliver collaborative service. And the degree to which we draw on community support is also a unique feature," says Bob Wallace, a group counsellor with the coalition.
"It's not just agencies delivering services to people but also two community members working as volunteers to support the service delivery," adds Wallace. And by involving people who are HIV+ in all aspects of service delivery, the coalition ensures that the voices of positive people are heard at all levels.
The six-person team operates without any external funding and leads 20-week psychotherapy groups for three target groups living with HIV/AIDS: newly diagnosed individuals, long-term survivors and women. After focusing on addressing depression when it first began, the coalition made a shift three years ago. "It became apparent that many clients have an experience of being stuck in life and having a lack of mobility and direction, which is broader than depression and doesn't just manifest itself as depression. So we reframed the groups so that they focus less on a problem experience and more on a positive life-changing experience – on living well."
The two-hour sessions are an open forum for attendees to speak their minds. "It is a great chance for everyone to say the things that they've never said to anyone before. The stuff that is really personal," says Randall, who has completed his 20-week session. "[Group members] are people you don't see every day, so there is safety. But you really need continuity. You need to see the person next week that you were talking to about something last week," he adds.
Getting survivors in the door is a continual struggle. "The idea of actually getting involved in a group is quite scary," says Wallace. Each target group faces unique challenges. "Folks who are diagnosed today are dealing with the social perception that 'you should have known better,' " he observes. The consequences are an increased sense of shame and difficulty legitimizing their own experience.
Long-term survivors – most of whom left work in the 80s and 90s – today live on the Ontario Disability Support Program and face increasing poverty. "Poverty marginalizes anyone and when you add HIV's marginalization, shame and stigma, it compounds the experience and contributes to depression for a lot of our clients."
HIV+ women often live in unsympathetic social environments and can experience tremendous isolation and a lack of connection with people who are positive. "One of the things the groups do that helps them cope is create a peer group where there is a sense that you're not alone," says Wallace.
"It's been a good healthy experience," says Randall. "I don't know what would have happened if I hadn't joined the group, but I feel I really have learned a lot from it. I guess I've learned to see myself a little bit more as others see me—that it's not as bad as I thought."
As a community program, the Coalition's work has proven highly effective. Two years ago, the provincial government initiated a community planning process to examine how AIDS service organizations and other affiliated service providers could deliver services more effectively across the barriers of organizations. They need only look at the eight-year-old Coalition on HIV and Mental Health as an example of success.
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