Bridging the Gap: HIV/AIDS and Mental Illness
Network, Summer/Fall 2004
Though it’s just a few blocks from Toronto’s busiest intersection, McEwan House seems miles away, on a quiet and shady residential street. There’s nothing unusual about the look of the red-brick house, but despite its inconspicuous exterior, McEwan House is unique. It provides residential and community support for a group of people who are often overlooked — people living with both HIV/AIDS and mental health or addiction issues. This group exists between two worlds, but there are some committed individuals who are working hard to bring those two worlds together.
The community health needs of people living with both HIV/AIDS and mental illness often fall into the gap between the work of AIDS-service organizations and that of mental health agencies. Both service providers share many of the same philosophies, such as health promotion and harm reduction, and the people they serve face many of the same challenges, including poverty, stigma and isolation. Nonetheless, the HIV/AIDS sector and the mental health sector have not yet been able to bridge the gap between them. As Jim Nason notes, the two worlds of HIV/AIDS and mental health “are definitely silos.”
Nason is the director of adult programs for LOFT Community Services, the organization that runs McEwan House. He worries that many people facing these two difficult health challenges aren’t getting the support they need. McEwan House is one of the few places that bring these two worlds together.
McEwan Housing and Support Services actually operates from four different sites, and currently provides support for 21 people in residential programs and 60 people in community-based programs. The programs run the gamut from 24-hour supportive care to independent living in separate apartments, and from peer support to goal-setting, skills teaching, and linking to resources in the community. As new medications for HIV have been introduced, the program has adapted to place more emphasis on rehabilitative needs, including self-care, medication regimes, and household management.
“One of the real philosophies of McEwan House is that it’s people’s home,” says Nason. “In all the sites, there’s a real sense of home. People come and go as they like, and staff are only there when they’re needed. We try to stay out of people’s faces. That’s the juggling act.”
John, who has lived at McEwan House for three years, agrees. He sits in the quiet kitchen and speaks intently about what it’s like to live here. “This is a good place for psychosocial [rehabilitation]. They deal with not only physical but emotional issues. I’ve never had that kind of care before.”
John struggles with both mental health and addiction issues, as well as HIV/AIDS, but like everyone else in the house, his journey and his story are his alone. HIV/AIDS presents unique challenges to everyone living with the illness. “This disease is tailored to the individual,” notes Steve, a seven-year McEwan House resident. Naming other residents, he continues, “My problem isn’t Robert’s, isn’t Don’s.”
Steve has created his own plan that is as individual as his experience, although his goals are often similar to those of other residents. Topping his list is the wish to secure independent housing, and to join the 80 or so members of the General Residents Association — people who no longer receive services at McEwan House, but continue to return for social events and other activities.
The planning process is a positive one, according to Steve. “It causes staff and myself to focus on what my goals are and to do something to bring them about,” he says. “One of my objectives is to get housing outside of McEwan House. I want a one-bedroom or two-bedroom apartment, but god, it’s hard to get them.”
Both Steve and John have experienced their share of mental health concerns. Steve no longer attends therapy — his therapist felt he was doing well enough to “graduate.” While John is looking forward to leaving McEwan House, he’s aware that being on his own may be difficult, and he has a plan to deal with that. “I need to make sure that I don’t get lonely if I do move out because that will be my depression, because I deal with depression a lot,” he says. “So what I’ll do is I’ll keep busy, I’ll make sure I keep going to my [Alcoholics Anonymous and Cocaine Anonymous] meetings because meetings really centre me.”
Mental health and cognitive problems are a common aspect of living with HIV/AIDS, whether they are a direct result of the illness or not. The relationship between HIV/AIDS and mental illness is unclear, but generally, people with chronic illnesses experience higher rates of depression than those without.
Cognitive impairments are also an issue. According to Dr. Sean Rourke, a clinical psychologist and director of research for Mental Health Services at St. Michael’s Hospital in Toronto, “cognitive complications of HIV happen in 30 to 50 percent of people living with HIV. What is most common is a neuro-behavioural disorder called Minor Cognitive Motor Disorder. It happens in about 20 to 25 percent of people with HIV, where there is clear documented evidence of cognitive compromise that affects daily functioning, such as work, or short-term memory.”
Whether or not there is a causal relationship, it is apparent that when someone is experiencing a mental health problem or cognitive impairment and has HIV/AIDS, the effects of each are compounded. Unfortunately, people living with HIV/AIDS often find that taking care of their own mental health becomes secondary to managing HIV, which in itself is a complex task. Often, health care providers and patients see depression and other mental health problems as the inevitable result of their HIV status.
According to AIDSmeds.com, an organization dedicated to providing people living with HIV the information they need to make empowered treatment decisions, “When a major source of stress is present, such as HIV-related problems, you may tend to accept depression as inevitable, understandable and unchangeable, and therefore inappropriate for medication-oriented treatment.” But as treatments for HIV/AIDS have improved over the last decade, and people are living longer, there is an urgent need to ensure that the mental health of people living with HIV/AIDS is not overlooked.
The desire to meet that need is what led Dr. Rourke to become involved in the Adding Life to Years project, a partnership of St. Michael’s Hospital, the Ontario AIDS Network and the Ontario Ministry of Health and Long-Term Care AIDS Bureau. The purpose of the project is to encourage and support community-based AIDS service organizations (ASOs) to address the mental health needs of their constituency. By developing tools, training and resources, as well as forging links to other community organizations, Adding Life to Years can help ASOs improve their level of “mental health literacy,” as Rourke refers to it, and their comfort level in addressing these challenges. He insists that the mental health and HIV/AIDS communities need to learn each other’s language and work together to develop programs that best address the unique challenges posed by living with both HIV/AIDS and mental illness.
“We need to break down the professional barriers,” Rourke states. “Think of the strength if all these groups came together.”
Funded by Health Canada through the National HIV/AIDS Capacity Building Fund, the Adding Life to Years project tapped into the existing network of ASOs to determine both the needs and capacity of the AIDS community to deal with mental health concerns. The researchers held focus groups of people living with HIV/AIDS and conducted surveys of ASO staff to determine where the gaps are in mental health care, and how they could be bridged. After the training and tools have been delivered, the role of researchers such as Rourke will be to gather evidence that the programs developed by the community are working for people living with mental illness and HIV/AIDS. “There is a good case to be made [for community mental health programs], and that’s where the researchers come in,” he asserts.
The project’s original partners are now collaborating with the national office of the Canadian Mental Health Association in a continuing effort to develop better mental health care for people with HIV/AIDS. One program that took place in Peterborough in 2003 provides a model of how two organizations can work together. The local CMHA branch partnered with the Peterborough AIDS Resource Network (PARN) to deliver a series of workshops specifically geared to the needs of PARN’s clients who had identified that they were experiencing symptoms of mental illness, particularly depression. The workshops began with a session on causes and symptoms, and concluded with a session on developing an individualized plan based on the techniques and resources they provided.
The success of the program was evident, according to Joni White, the Health Promotion Education Specialist at CMHA, Peterborough. “The participants picked up knowledge, coping strategies, a personal plan and validity for the feelings they were experiencing,” says White. “They may have felt that it was related to their HIV status, not necessarily a separate issue, but it validates what they have been feeling.”
As far as Nason is concerned, collaboration between the mental health and the HIV/AIDS communities cannot come too soon. The particular needs of people experiencing both HIV/AIDS and mental illness are both unique and difficult. “There are huge barriers and huge challenges.” People with HIV/AIDS and mental illness are vulnerable, Nason notes. “The physical and emotional vulnerability is just phenomenal. You need staff that understand both [HIV and mental illness].”
Programs such as McEwan House and initiatives like the Adding Life to Years project are a good start. “There has been a slight improvement,” says Nason. “People are less afraid of HIV/AIDS than they used to be, and people understand mental illness better than they used to. Doors are opening.”
But of course, there is still a long way to go. Anyone who has a mental illness or HIV/AIDS will tell you that the battle against stigma is one of the most difficult. According to John, people “have a category of where you belong if you’re HIV-positive, and a category you belong in if you have AIDS: ‘If you’re HIV-positive you’re spreading it, and if you have AIDS, you’re sick and you’re going to die…You don’t even deserve to be part of society anymore, so just stay in your corner.’”
Jim Nason echoes John’s words. “One of the overriding issues that all the folks continue to face is stigma and isolation. People are very isolated. For people with mental health challenges, their families are burned out, or ashamed — and that’s compounded with HIV/AIDS.”
That was also White’s experience when she developed the workshops in Peterborough. “Families have had their limits pushed and may not want to be involved. With both mental health and HIV/AIDS, families sometimes develop distance and so the support network isn’t as good as it could be.”
For Dr. Sean Rourke, these challenges are what afford such a tremendous opportunity to make a difference in people’s lives. “This is a very unique social experiment that could lead to social revolution.”
For more information about McEwan Housing and Support Services, visit www.loftcs.org or call 416-929-6228. For information about the Adding Life to Years project, contact Sean Rourke at firstname.lastname@example.org or 416-864-6060 ext. 6482.
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