This article previously appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
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 Peer navigationprogram 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.”
When asked about the program’s other successes, Bradford laughs and says: “Are you ready?”
The list is impressive for a program that’s a little over three years old: more than 300 clients; nine full-time and part-time navigators who serve a diverse client population; people getting the care they need faster; more people on treatment; a satellite office for peer navigators at St. Paul’s Hospital, so clients can drop in on a navigator whenever they need one; and fewer silos between clinics and community organizations like Positive Living B.C., which means that clients have better access to more services.
For clients, having a peer navigator means they have access to someone who can relate to what they are going through. Like their clients, many navigators have struggled or may still be struggling with addiction and recovery, mental illness, stigma, disclosure, homophobia and feelings of isolation or uprootedness. This allows them to empathize with clients and offer practical advice based on their lived experience. This can alleviate some of the stress of getting a diagnosis or starting treatment and makes people feel less isolated.
Having a person who can model good spiritual, emotional and physical health can make a world of difference. “My navigator was someone who was very physically and socially active,” Beasley says. “It helped me to see a really healthy person sitting across from me talking about his own experience being diagnosed and navigating the healthcare system.”
As a client, Beasley received one-on-one counselling and learned about the basics of HIV as well as the impact that treatment could have on his physical health. He was also connected to alternative health services—massage, acupuncture and reiki—to help with his emotional and spiritual health, and to social groups like Suits, a dinner group for poz gay men in Vancouver.
Peer navigator programs such as the ones in Vancouver, Regina and Kamloops are designed to strengthen the confidence and ability of clients to manage their own care. Ultimately, the goal is to improve clients’ health, appointment attendance and adherence to medications.
Instead of delivering one-size-fits-all solutions, support is tailored to the needs of each client. A care plan is developed based on what the individual sees as their priorities. Navigators are there to help clients reduce the barriers that many people living with HIV face when seeking healthcare—no barrier is too small or too large. Many people living with HIV, like Beasley, need basic information about HIV, treatment and the supports that exist in the community. Others need more intensive, long-term support—finding housing, dealing with substance use or mental health issues. Newcomers, people who speak English as a second language and people with literacy challenges often face a plethora of linguistic and literacy barriers. In a nod to Vancouver’s ethnic and linguistic diversity, Peer Navigation Services employs one peer who speaks five languages. This has reduced barriers for clients who speak English as a second language.
Bradford says that a lot of people mistrust the healthcare system: “They want their healthcare provider to give them treatment information, but they don’t necessarily trust that it’s going to work.” That’s where the navigators come in. Clients “need to hear it from someone else: ‘Yes, HIV really is different now. The meds are better. You will live a longer life.’”
Though the successes and benefits are undeniable, these programs are not without their challenges. For one, they require ongoing funding and resources, and enough navigators to meet the demand. This may explain why there are so few such programs in Canada despite their benefits. Also, it can take time to build trust and foster open communication between clinicians and peers, especially in situations where a peer is also a patient of the healthcare provider with whom they are working.
Bachynski, former coordinator of the peer navigator program in Regina, can attest to that. “Some of the mentors have had conflicts with clinic staff in the past, so for both the mentor and the staff, there can be hard feelings.” But Bachynski says that having navigators on-site some days to provide drop-in services for clients helps both navigators and clinicians see the navigators as professionals.
Maintaining good self-care is also a constant challenge for peers. Gloria Tremblay, an HIV-positive woman in her 70s who mentors at the Regina program, says that one of the biggest lessons she’s learned in her work is that “you can’t help someone if you don’t take care of yourself.” For Tremblay, that means spending time with family, volunteering in her daughter’s French immersion class and making sure she always looks as good as she can when she leaves the house. Glen Bradford echoes Tremblay’s belief that peers need to take care of themselves. “Peers give it their all to help others,” he says. “They’ll sacrifice their own well-being to help.”
For the first while after his diagnosis, Beasley met with his navigator weekly, but, he says, “it pretty quickly became a check-in once every few weeks. And then I became a peer navigator myself.” Both the Vancouver and Regina programs have seen former clients graduate to become peer navigators. “Because [my diagnosis] is pretty new for me,” Beasley says, “I have a lot of empathy for others who are newly diagnosed. It’s still fresh in my mind—what it’s like to get the news, what it’s like to tell friends and family and people you’re dating.”
Although Canada’s HIV navigator programs were established to help clients improve their lives, one of the unintended consequences has been that they help navigators, too. Beasley became a peer navigator to give back to a program that he says helped him immensely. But he found that in his role as navigator, the program continued to help him: “Just being able to see other people live healthily with HIV helps me on my journey of self-acceptance.”
Tremblay says she gives a lot to the Peer-to-Peer Program. She pauses and then adds: “But I think I am getting even more. That’s what keeps me going. I think I’m getting more than I am giving and I’m giving 150 percent.”
HIV Peer Programs
People living with HIV were some of the first people to provide support services to others living with the virus. Here’s a roundup of some of the peer programs that help people with HIV navigate treatment and care.
Peer Navigator Services
Positive Living B.C., Vancouver
Regina Qu’Appelle Health Region, SK
Chronic Health Navigation Program
AIDS Society of Kamloops (ASK), BC
Peer support takes different forms in other parts of the country:
My Life with HIV
AIDS Community Care Montreal
A 6-session workshop for people who are newly diagnosed, treatment-naïve or having trouble staying on treatment. This treatment-readiness program is developed and delivered by PHAs, for PHAs.
Peer-Supported Treatment Decisions
Toronto People with AIDS Foundation
HIV-positive gay men are paired up with other gay men living with HIV for one-on-one counselling. Over the course of 4 sessions, motivational interviewing is used to help clients prepare for treatment, adhere to their medications and improve their health outcomes.
Circle of Care Peer Support
Toronto People with AIDS Foundation
A peer support program that helps women with HIV navigate social services, accompanies them to appointments, offers interpretation services and other supports.
If you know of other HIV peer navigator programs in Canada, please tell us about them.
Unfortunately, peer navigation is not available in many parts of the country. If you are looking for information or support, call CATIE’s toll-free line at 1.800.263.1638. Your call will be treated as private and confidential. You can also check out our many online resources on living with HIV, starting treatment and emotional wellness.
About the author: Logan Broeckaert is a researcher/writer at CATIE. Before joining CATIE, Logan worked on research and knowledge exchange projects for the Canadian AIDS Society and the Ontario Public Health Association.
Illustrations by Ian Phillips