Family health

Changing the minds of the vaccine hesitant requires actually listening to them

To reach herd immunity, we need up to 90 per cent of the population to get shots in arms. That means helping a critical minority feel confident about getting the vaccine.

Michelle DesRosiers is a non-binary parent and IT consultant in Kitchener, Ont., with hair that’s dyed metallic red at the top and shaved at the sides. When they were pregnant with their second child during the H1N1 pandemic, both their family doctor and obstetrician told them, “Basically, you would be crazy not to get the [H1N1] vaccine,” according to DesRosiers. The discussions made them feel “almost on a personal level like there’s something wrong with me to even question it.” Feeling they couldn’t discuss it with their doctors, DesRosiers turned to Google and came across anti-vaccine info that “seemed science-based.” From then on, DesRosiers stopped vaccinating their children. Over the next 10 years, they learned that other parents and friends would judge their vaccination decisions, and they stopped talking about it.

Now, with experts saying we might have to vaccinate as much as 90 per cent of the population to reach herd immunity, health advocates are determined not to make the same mistakes DesRosiers’ doctors made. Compared to countries around the globe, Canada has above-average rates of confidence in vaccines, which is part of the reason we’re now a world leader in single doses. And the number of hesitant Canadians has been trending downward since March, when 36 per cent were either unwilling or unsure. Still, there is cause for concern. The results of a June poll by the Angus Reid Institute say nine per cent of Canadians won’t get a vaccine, and seven per cent either aren’t sure they will or want to wait longer to make a decision. That’s 16 per cent of Canadians who aren’t exactly running to book their vaccine appointment as soon as they hear they’re eligible. As of mid-June, 65 per cent of Canadians had at least one shot, but the speed of vaccination was slowing, and some provincial governments were starting to worry. Manitoba announced in early June that those who got vaccinated could enter a lottery for cash prizes worth up to $100,000. At the time, hesitancy was high in some rural communities of the province; in one, only 13 per cent had received a vaccine, compared to a provincial average of 63 per cent.

The stakes are high. Before vaccines, more than three per cent of those who tested positive for COVID in this country died, and that was when the more deadly variants weren’t spreading. Toronto-based family physician Dr. Ritika Goel summed up the collective anxiety around hesitancy when she tweeted in early May: “I’m afraid for my patients who may die because they were more worried about the vaccine than the real risk of COVID-19. I worry I will have failed at changing their minds and it will be too late. Every day, these conversations haunt me.”

Why are people hesitant? Memes and cartoons characterize people who don’t want to get vaccinated as selfish, close-minded or conspiracy-obsessed. But the reality is that staunch conspiracy peddlers are only a fraction of those who are saying no to vaccines. The majority of those who fall in the “vaccine hesitant” category have understandable reasons to be concerned, says Dr. Maya Goldenberg, associate professor of philosophy at the University of Guelph and the author of Vaccine Hesitancy: Public Trust, Expertise and the War on Science. The good news: they’re open to changing their minds about vaccines, and it’s not only health-care professionals who can help get them there. Experts say we can all inspire vaccine confidence in friends, family and acquaintances, by sharing information and personal experiences about vaccines and having non-judgmental conversations that speak to people’s concerns.

The World Health Organization describes vaccine hesitancy using three “C themes”: confidence, complacency and convenience. Confidence is a big one—some people are hesitant because they don’t have a lot of trust in the government officials or health system authorities telling them vaccines are safe and effective. Vaccine hesitancy in Canada is higher among those who lean to the political right and are generally suspicious of greater government intervention in people’s lives, according to a 2021 study from the Media Ecosystem Observatory, a joint initiative by McGill and the University of Toronto. This may explain why Alberta has higher rates of hesitancy, says Dr. Finola Hackett, a resident doctor in rural family medicine at the University of Calgary and a volunteer with the Calgary-based health advocacy group 19 to Zero. It may be part of the high hesitancy in rural Manitoba, as well.

Confidence can also be shaky among groups that have “a history and even a present situation where health care is not always working to their benefit,” says Goldenberg. Research shows that includes Indigenous people and Black people, who historically in Canada have been subject to harmful experimentation without their consent. Today, these communities continue to face discrimination in the medical system. For example, studies show Black people’s pain is often undertreated. And multiple reviews show Indigenous people face high rates of discrimination and abuse in health settings, as captured by Joyce Echaquan in a video in which a health-care provider hurled insults at her in a Quebec hospital before Echaquan’s death in 2020.

The confidence explanation also fits people like DesRosiers, who shy away from vaccines after being dismissed by health-care providers—studies show compassion is a key building block of trust.

This gives perspective to reports earlier this year that around half of personal support workers were wary about the vaccines. After being asked to work without proper PPE, without sick days and other supports, some essential workers were suspicious when they were suddenly prioritized for the vaccine, says Dr. Zain Chagla, a Toronto-based infectious disease physician. “We’ve thrown [essential workers] under the bus . . . and now all of a sudden, we’re saying, ‘Just take the vaccine and you’ll be fine,’ ” he says. Goldenberg says it was egregious that in the first stage of the rollout to health workers, we expected them to line up, despite the fact that many weren’t provided with Q&A sessions about the vaccines. We should have known better, she says, as “we have a history of vaccine hesitancy among health-care workers around the flu vaccine and other vaccines.”

The next C in the list, complacency about the disease, may be less of an issue with COVID compared to, say, eradicated-in-Canada polio (thanks to vaccines, ahem). But health researchers are hearing the sentiment from some vaccine-reluctant folks that because they’re healthy, they don’t have to worry about COVID. And complacency is likely to increase when COVID rates go down due to first doses of vaccines. Complacency may help explain why, according to a mid-April poll by Abacus Data, people aged 30-44 were almost three times as likely to be against or unsure of COVID vaccines, compared to those aged 65 and up.

The convenience category, also described as “constraints” by some researchers, represents the pragmatic barriers that might stop people from getting a vaccine, especially those who aren’t super eager to begin with. Constraints are lineups and vaccine clinics that require people to drive or take transit for an hour. This category also includes “digital literacy and language barriers, and whether people have paid sick leave if they have vaccine side effects,” says Sabina Vohra-Miller, a pharmacologist and science communicator who co-founded the South Asian Health Network.

In many cases, people are in an overlapping part of the Venn diagram of confidence, complacency and constraints. Stacy, a Black single mom homeschooling five in a hotspot in Toronto who prefers to use her first name only, thinks she’s already had COVID and therefore has some immunity. But her bigger issue is confidence. She feels like the vaccines were expedited; she points out that in the rush to get out the polio vaccine in the ’50s, a batch that mistakenly contained live polio virus ended up killing five kids.

But the roots of Stacy’s wariness go deeper than a deadly human error from almost 70 years ago. When I ask about her overall experiences in the health system, she says she’s “never really had any problems with the systematic medical racism most people of colour face” because “I call it out, and I try to block it off. I say, ‘No, no, no, this is what should be done.’ ” She credits this approach—pushing back, cross-checking information—for keeping her, and her kids, healthy. The same low level of confidence that can be detrimental to vaccine uptake can be helpful at other times.

Telling people who have reason to distrust the health system that “Health Canada says it’s safe, you shouldn’t be worried about it” is not going to work, says Vohra-Miller. The discussion “has to be very nuanced and trauma-informed.” Vohra-Miller says she’s had half-hour-long conversations with people who were reluctant about vaccines. For some people, it takes many conversations. Dr. Adam Vyse, a High River, Alta.-based family physician, says most hesitant people, however, are either on the fence or pretty close to it. And it doesn’t take long to persuade that “movable middle,” as he describes it. Providing concrete information to address their particular concerns is often enough to convince someone to be immunized, he says. Hesitancy is fluid.

Vyse helped set up a clinic that addresses all the Cs. For one, it’s located on the grounds of the Cargill meat-packing plant near High River, so workers wouldn’t have to sacrifice an afternoon’s pay to get their shot. The fact that Vyse and the other health workers are familiar faces—they’ve been providing isolation advice, and linking workers to income and food supports, since the start of the pandemic—helps to address confidence. “To build that trust takes consistency. It takes being open and available, it takes translation and it takes building alliances with community partners,” says Vyse, noting that information for the Cargill vaccine clinic has been translated into nine languages, including Tagalog, Arabic and Chinese. In speaking to his patients, he also addresses complacency, as some believe they already have natural immunity. He explains that yes, natural immunity is good, but vaccine-driven immunity has been shown to be “much more robust” and longer-lasting than natural immunity. The multi-pronged strategy has been successful: as of early June, around 1,700 of the 2,200 workers, or 77 per cent, had been vaccinated at the clinic, according to Cargill spokesperson Daniel Sullivan. (Additional workers got their vaccines at public health clinics and pharmacies, but Cargill can’t track that number.)

Though the WHO model may seem clear-cut, vaccine hesitancy is nuanced, filtered through highly individual experiences and values. Take my friend Theresa, who’s had the same long brown hair and perfect skin since grade school (and also prefers to use her first name only). She lives with her husband and kids in southern Ontario. She’s organized, but not in a fussy way, and she’s quick to laugh at things, like epic spills, that would cause others to lose their cool. She’s exactly the kind of person you’d want in her job, supporting adults with special needs. But she hasn’t yet been vaccinated, despite being eligible for more than a month as an essential worker.

In our conversation, she says it’s still possible to get COVID after getting the vaccine and she’s worried about the side effects—she gets debilitating headaches as it is. But as we talk more about this risk-benefit calculation, she says, “I’m just anxious. I get anxious about new things.” That’s not exactly captured in the WHO model. But we all tend to overemphasize risks when anxious. Being able to get the vaccine around people she feels comfortable with would likely help Theresa. Ironically, in April, public-health workers came on site to vaccinate clients and staff at her workplace, and Theresa assured her manager she would make a game-time decision. But in the end, she didn’t have the option. The vaccination team didn’t bring enough shots for all the staff members.

Grassroots organizations have been working to build vaccine confidence in frontline workers like Theresa, especially in heavily racialized and low-income hotspot areas. The Greater Toronto Area’s South Asian Health Network, for instance, has been organizing virtual town halls on vaccines since early March. Vohra-Miller, who has spoken at them, will say to the people in attendance: “Yes, we haven’t done enough to protect our communities,” she tells me. “There’s no gaslighting on that; there’s no making excuses for it. We talk about the racism in health care that everyone has had to face, and things that need to be changed.” Then, when vaccine educators share encouraging information—such as the fact that the two-dose regimen reduces hospitalization due to COVID by 94-97 per cent—they’re more likely to be seen as trustworthy.

Groups like Toronto’s Thorncliffe Neighbourhood Organization have also been highly organized, going so far as enlisting property managers and superintendents to announce vaccine clinics on emergency announcement systems in residential buildings. These groups didn’t become as innovative as they did because their communities had especially high rates of hesitancy. Instead, they saw how hard-hit their communities were, with higher rates of essential workers and multi-generational households being infected with COVID-19, and they knew that vaccines were their best hope of stopping the devastation.

That racialized communities have been more often singled out as being “hesitant” frustrates Dr. Suzanne Shoush, a Black and Indigenous family physician who works at Unity Health in Toronto. For one, the narrative can be used to say that low-income and racialized people are getting vaccinated at lower rates by choice, when the reality is likely more by design. Pharmacy-based vaccine clinics have been far less accessible in low-income communities compared to high-income ones, for example. The narrative is also discriminatory. “You can have hundreds of white people at a rally against masks and vaccines, and we don’t make the assumption that white people don’t trust the vaccine,” Shoush says. “A Black person says they don’t want the vaccine to one person, and suddenly that becomes, ‘All Black people don’t like the vaccine.’”

A woman leans against her desk in front of a mural of a turtle at her midwife clinic

Dr. Shoush photographed at her “Call Auntie Clinic” at Seventh Generation midwives in Toronto. Photo: Solana Cain

In fact, vaccine concerns are more common in rural areas, which are largely white. Hank, a 39-year-old real estate broker in southern Alberta who prefers not to give his last name, isn’t yet eligible for the vaccine, but he isn’t sure he’ll get one. He’s wary of the new mRNA technology and the possible side effects in proportion to his risk of COVID. “I still have a higher risk of getting into a car accident than ending up in the ICU because of COVID,” he says. But that may not be true, at least not when we spoke, as the disease was ripping through his town at that time.

Telling people they’re wrong is not an effective strategy, according to Goldenberg and many others who research hesitancy. So I agree with Hank that, being a relatively young and healthy person, he’d probably have a milder COVID course should he become infected. But I tell him the evidence is growing that vaccinated people are far less likely to both get and spread COVID. Does it resonate with him that, if he gets vaccinated, he’ll be less likely to give the virus to someone who could end up in the hospital? “Definitely,” he says. “We’re compassionate about other people and I see elderly clients,” he says. “My wife and I, we’re on the fence. I’m pretty sure we will get it, and that will be the reason—to stop the spread and get businesses opened up again.”

Evidence shows that most people are like Hank—more likely to be encouraged by positive, rather than fear-based, messaging. Shoush says she used to be “super over-the-top” about the dangers of not vaccinating, because as a doctor working in the North, she saw a child die of a vaccine-preventable disease. “It is ungodly to watch a child die of meningitis. It is truly . . . it’s burned into your soul,” says Shoush, who has supported vaccine clinics in northern Ontario as well as an Indigenous-run vaccine clinic in Toronto. But, she says, when “we try to tell people that’s what we’re trying to stop from happening . . . [it] doesn’t work.” That’s not to say that sharing stats about a disease’s hospitalization or death rates doesn’t help—it can, especially with complacency—but the evidence shows emphasizing fear can counterintuitively make people want to avoid the topic altogether, rather than engage with the information.

Shoush works to counter the perception that the vaccines were rushed. She tells her patients, “The 2003 SARS pandemic triggered huge interest in the potential for mRNA technology to be applied to vaccine development.” In other words, “there’s been research going into mRNA vaccines for more than 15 years.” She puts a positive spin on it, too, explaining the vaccines’ development is an example of what happens when “we put our brightest minds” toward the same goal, all around the globe.

In Alberta, Hackett’s 19 to Zero group talks about how vaccines are “how you can see your loved ones again.” They try to frame vaccines as “calling people to action, as something you can actually do,” she says, “whereas ‘stay home’ is calling people to inaction.” Positive messaging from people you trust is a double whammy, says Hackett. “It’s way more effective for a friend or family member to talk to someone about vaccines, than for me, a physician who they don’t know.” Her group holds town halls with community leaders to “equip people with the tools to go and have these conversations.” Even seeing smiling selfies of friends and neighbours getting vaccinated, and hearing about their not-so-bad experience with sore arms, can be extraordinarily powerful, adds Vohra-Miller. When she talks to people in her community, despite all the data and information she shares, the biggest question she gets is: “Have you had the vaccine?” (Unsurprisingly, she has.)

More surprising, perhaps, is DesRosiers’ decision to get the vaccine and bring their oldest child for his COVID vaccine this spring. Just before the pandemic, they became involved with “a very empathetic doctor” and the subject of vaccines came up. “He invited me to talk. He’d say, ‘Tell me what you’re not sure about, and I can help you navigate the information,’ ” DesRosiers says. He didn’t dismiss DesRosiers’ concerns about Guillain-Barré syndrome post flu-vaccination, for instance. He said DesRosiers is right that it’s a risk, but the risk of Guillain-Barré after getting the actual flu is 17 times higher. Today, DesRosiers plans to catch their children up on their childhood vaccines.

DesRosiers’ story is common—mothers raising concerns with pediatricians, “getting shut down” and then going online, “where they can easily tip toward a more hardened view,” says Goldenberg. As younger children become eligible for vaccines, parents are going to have concerns about the risks versus benefits for their kids, who are far less likely to get seriously sick from COVID, but have died from it, and can pass it to others. Rather than dismissing a parent who’s concerned, “acknowledge that asking questions is actually a sign of good parenting,” says Goldenberg.

Advocates have been training health workers across the country in ways to encourage people to get their COVID vaccinations, or bring their children for their shots. But experts say everyday Canadians can help, too, by assisting people with booking their appointments, for example, and providing information that can help assuage fears. We don’t need science degrees to have these conversations. We just need empathy.