Someone Who's Sailed the Same Seas: On Peer Mentorship and HIV
When Matthew Beasley was diagnosed with HIV in 2012, he had many questions about the illness and needed support. "I didn't know what a CD4 cell was. I didn't know what 'viral load' or 'undetectable' meant," says the 32-year-old graduate psychology student from Vancouver. And Beasley isn't alone. Most people newly diagnosed with HIV face a steep learning curve: There's much to know about the virus, treatment, how to disclose, how to stay healthy, safer sex and self-acceptance. Who better to help than someone who has sailed the same waters?
The nurse who diagnosed Beasley did what most diagnosing clinicians in Vancouver now do: He told Beasley about Peer Navigator Services, a program of Positive Living B.C. The program -- the first of its kind in Canada -- pairs people who are newly diagnosed, or who were diagnosed a while back but haven't been linked to services for some time, with peer navigators. Peer navigators are HIV-positive individuals who have been trained to make information about HIV, treatment and other related health issues easier for clients to understand. They've also been trained to provide emotional support and help the person they're paired with to navigate a healthcare system that can be bureaucratic, fragmented and overwhelming.
"I was shy going in there ... a little nervous," says Beasley about his first meeting with his peer navigator. But he knew from his experience as a recovering addict how beneficial it can be to talk to somebody about his concerns. For Beasley, being able to interact with someone with HIV who was living a full and healthy life was critical to his own self-acceptance and to how he viewed his future. "I didn't have to live in the closet about being HIV positive," he says. "It helped confirm for me that HIV wasn't going to be a crippling disability."
Peer navigation gets at the heart of what a person living with HIV needs when engaging in care: someone who knows what you are going through and can walk alongside you through the process. This relationship has had the effect of providing invaluable support to clients, as well as the unintended consequence of benefitting navigators, too.
Nicole Bachynski, who coordinated a peer navigator program in Regina, says that for clients, having a peer makes the whole process of getting healthcare a bit more comfortable and less daunting. "To have that peer beside them, walking them through what can be a scary experience, can be critical."
Peer support in one form or another has probably been around forever. Peer navigator programs (a formalized version of that relationship) have their roots outside of HIV. One of the first comprehensive programs was introduced in 1990 at the Harlem Hospital Center in New York City by Dr. Harold Freeman. The program was developed to improve breast cancer screening and diagnosis rates among low-income, mostly black, women who were more likely to receive late cancer diagnoses and inferior healthcare. The impact was dramatic: As a result of the hospital's patient navigator services and other factors, the likelihood of breast cancer patients being alive five years after their diagnosis increased from 39 to 70 percent. Since then, similar programs have been established to improve the health and wellness of clients and patients in other areas: mental health, diabetes care, palliative care, treatment for substance use -- and HIV care.
Canada currently has three comprehensive HIV peer navigator programs. In addition to the program at Positive Living B.C., the Peer-to-Peer Program in Regina provides peer support for people living with HIV in Saskatchewan, and at ASK Wellness in Kamloops, BC, peers (and HIV-negative social workers) provide navigation services to people living with HIV, hepatitis C and other chronic conditions.
Peer support has been a mainstay of HIV work since the beginning of the epidemic, and HIV peer navigator programs are built on that long history. They provide the added benefit of being integrated in the healthcare system, making it more accessible for people with HIV. Another major difference is that peer navigators are paid -- for some, it's their full-time job.
Peer navigator programs are built on the premise that people living with HIV have the best understanding of what it means to live with HIV. Peers (sometimes called navigators or mentors) use their lived experience to support and counsel other people living with HIV. What this looks like for each client varies: Some clients need someone to talk to. Others need a navigator to help them find a doctor, accompany them to their medical appointments or advocate on their behalf.
We know that a lot of people living with HIV could use some extra help navigating what can sometimes be a complex and unfriendly healthcare system. Somewhere between being diagnosed and receiving effective treatment, many people living with HIV stop seeking regular care. There are many reasons for this. Some are personal -- for example, someone who feels healthy might not want to see a doctor and be reminded of their status, or an individual from a small community may worry about their family and friends discovering their status. And some of the reasons are structural -- such as a lack of stable housing or healthcare that doesn't accommodate the needs of newcomers and people with limited literacy. When people are dealing with pressing issues in their lives, their health can sometimes take a back seat.
Statistics confirm that a significant portion of people diagnosed with HIV are falling through the cracks. If we take a basic measure of the success of HIV care (by no means the only or best measure), in the United States only about 25 percent of people living with HIV have an undetectable viral load. This indicates that there are serious gaps in HIV services. In British Columbia -- the only Canadian province that has published comparable numbers -- about 34 percent of people living with HIV have an undetectable viral load. We know that many people are not linked to care, and some are linked to care but don't continue to receive the care and support they need.
Glen Bradford, who coordinates Peer Navigation Services in Vancouver, notes that getting people from diagnosis to care can be challenging. When Peer Navigation Services was started in 2010, the average time between a person's diagnosis and their entry into care was three years. "People were out there spiraling on their own," he says, but "the emergence of peer navigation services in Vancouver helped reduce the time between diagnosis and entry into care from three years to three weeks."
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
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