Alexis Danielsen sat down and rolled up her sleeve. When the shot went into her arm, one thought flooded her mind: “Finally!”
It was May 2021, and she was receiving her first Covid shot – in fact, her first immunization of any kind. She was 39.
Danielsen grew up in an anti-vaccine household, views she held well into adulthood. When her son was born, she declined all vaccines for him.
Then she hit a personal crisis, and started rethinking all her beliefs – including on vaccinations. It was like pulling on a thread and watching an entire sweater unravel, she said.
“The Covid vaccine was the only logical choice after really re-evaluating what I believe in, what I actually believe is true,” Danielsen said.
Danielsen partly credits her about-face to Lydia Greene and Heather Simpson, the founders of Back to the Vax, a support group for people like themselves: one-time vaccine skeptics who’d had a change of heart.
“I want to be able to help stop people from going down that road, having been down it myself,” said Greene, now a nursing student.
They say their goal is to help families find evidence-based answers to their questions. Vaccine hesitancy was a growing problem even before the pandemic, particularly among parents. Now, nearly one-third of American parents are opposed to vaccinating their children against Covid-19.
Although parents still have a lot of questions about vaccines, advocates say that answering them can help. Online support and in-person community groups can help address longstanding hesitations, some of which arise from poor experiences in the medical system.
For example, parents tell Greene they are still waiting for more information to come out on the Covid vaccines before deciding whether to vaccinate their children. “What’s missing is that, in the US right now, millions of children in that age group have been vaccinated and are followed closely with V-Safe and other databases to show the safety of the vaccine,” Greene said.
Parents also believe that Covid is mild in children and poses a low risk to them. But kids can suffer from long-term effects – and continued transmission also affects their emotional wellbeing. In the US, more than 167,000 children have lost a caregiver to the virus, Greene said. “We’re seeing this massive epidemic of not just Covid but kids becoming orphans before their time.”
Her two older children are vaccinated, but her three-year-old isn’t eligible yet, and when Covid struck their household the older children developed mild cases, but the younger boy needed to be taken to the hospital. “It affected everything,” Greene said: his lungs, his eyes, his ears.
The decision isn’t between getting vaccinated and doing nothing, she said. It’s between getting vaccinated and getting Covid. “The question is, do you want to be vaccinated before you go through it?”
Still, she understands exactly how vaccine hesitancy can be driven by the healthcare system. Back when she was anti-vaccine, Greene said she remembers doctors reacting with vitriol when they found out. “It just made me close myself off further – I felt really judged and upset and hurt and embarrassed.”
Many people feel that way about the healthcare system, particularly those who haven’t been well-served by it in the past, said Jason Autar, chief operating officer of Oyate, a non-profit that has vaccinated 30,000 people in underserved communities in New York City.
If you don’t have a regular physician or pediatrician, it’s difficult to find good answers to your questions, he pointed out – which is often the case due to “decades of negligence within our communities”, especially among communities of color, where Covid vaccine hesitancy is built upon years of inadequate healthcare and other systemic problems. “That’s what’s leaving us behind, and that’s what’s causing that hesitancy.”
Being consistent and visible within the community is important, Autar said. “It can’t be just a moment here and now type of thing – ‘When we have a surge, we’re going to come back out and galvanize all those resources.’ No, we still are in a pandemic. And we need to still remain visible within hesitant communities. And that’s hard work.”
He added: “Our approach has always been ‘we’re here to educate you about the vaccine, your options, your choices’, rather than take the approach of ‘you need to get this vaccine’.”
Greene echoes that. Reaching hesitant families means withholding the kind of judgment that kept her ashamed, and understanding that people have legitimate concerns that need to be addressed.
“It’s almost a knee-jerk reaction to just stop them in their tracks and correct them, but that’s only going to further alienate them. You have to listen to them with an open mind,” Greene said. And then health workers can start responding to those specific concerns and opening the lines of further communication. “Hear them out fully and say, ‘Oh, let me look into that for you.’
“They may not change their mind overnight, but by taking your time, you’re ensuring that they could change their minds,” Greene said. “But if it becomes this conflict and it’s a negative experience, you’re basically closing that door off completely.”
Women make about 80% of health care decisions for families, on average, and vaccination decisions frequently fall to mothers. “There’s so much pressure for moms to do everything perfectly,” Greene said. Among middle-class mothers, for instance, there’s a message that “you can afford all these products to do better, and so you don’t need vaccines – vaccines are for poor people.
“There’s so much influence on social media, on how to parent. Everyone wants to do their best. And it’s easy to kind of hack that desire to profit.”
While social media has played an outsized role in driving this misinformation, it can also be used to provide accurate information, Greene said. “You can text a pediatrician or tweet at an infectious disease pediatrician who actually knows about kids and infectious disease, and they will answer your questions. It’s amazing.”
When Danielsen told the public health nurse giving her the Covid shot that it was her first ever vaccination, the nurse was thrilled. “She was super excited for me,” Danielsen said. They kept in touch, and the nurse gave Danielsen and her son all of their vaccines over the next few months.
For people who have skipped vaccinations in the past, building relationships like these can be incredibly helpful, Greene said. That way, “you’re not having to re-explain why you’re catching up on all these vaccines – because even just explaining yourself can bring a lot of anxiety.”
Danielsen agrees about the importance of medical professionals creating a bond with patients. “Doctors and nurses need to know that there’s a lot of people who are really scared of them,” she said. “So many people have bad experiences in the medical system … [which] makes it really hard to trust them.”
As for her own decision to finally get vaccinated, she was embarrassed to have waited so long, and worried she might face mockery or contempt for putting her son at risk. Instead, she’s been surprised to be welcomed into the scientific community. “Everyone is like, ‘Yeah, you changed your mind. That’s fucking awesome.’”