Doctors told Stockton mom Meghan Brenner that the benefits of vaccination far outweighed the risks of side effects. Still, she couldn’t shake the nagging fear that her child, now 2, could be sickened by the shots. She’d seen firsthand a foster daughter suffer a high fever after a vaccination, and heard stories of seizures. She’d read the work of Dr. Robert Sears’, whose book, which discusses vaccine side effects and ingredients, is influential among parents who are leery of vaccines. The idea of potentially dangerous additives scared Brenner.
The former teacher, now a stay-at-home mom, knew a study linking vaccines with autism had been debunked. And, in theory, she liked the idea of herd immunity and the protection it confers on everyone. But, for her children, who have only flown once on a short hop to Las Vegas, diseases like polio seemed a world away.
“Where is a parent coming from? What mental model are they using that’s causing them to hesitate?”
She looked at her daughter’s fragile baby body and felt the tremendous weight of the decision before her. “You can’t un-vaccinate them—you can’t go back,” she says. “If anything happened, I wouldn’t forgive myself. I can see both sides. As a parent, you make the best choice you can.”
California’s recent measles outbreak has underscored how many parents are making similar choices not to vaccinate, and what effect those decisions are having on the herd immunity that public health relies upon. A Kaiser Permanente study published in Pediatrics this year found clusters of Kaiser members as high as 18 to 23 percent in some areas.
Public health officials, pediatricians and researchers are grappling with how to reach vaccine-hesitant parents like Brenner, tailor their messages and ultimately persuade them that the minor risks of vaccine side effects are far outweighed by the benefits of immunity.
“There is no perfect way with every parent,” says Tracy Lieu, the study’s lead author, a pediatrician and director of the Kaiser Permanente Division of Research. “Where is a parent coming from? What mental model are they using that’s causing them to hesitate?”
Social Circles Shape Feelings About Vaccines
The Kaiser study found that, on an individual level, under-immunization—where a child misses one or more of the required doses before age 3—was higher in neighborhoods with more families in poverty as well as those with more graduate degrees. But even after adjusting for factors such as race and income, the study still found statistically significant geographic clusters of under-immunization. That leads Lieu to think that worries about vaccines may be fed by social circles.
“It’s really common for parents to get information from other parents on any topic,” she says. “Particularly if you have some questions, you may be a little more inclined to think other parents might have useful information and might not want to accept only what traditional sources might think.”
Stay-at-mom Jennifer Conran, who lives in Pacifica, says she can understand how these clusters form and multiply. At Frontierland Park, a popular public gathering spot nestled against the hills, parents chat while their children explore the castlelike play structure.
The success of public health vaccination efforts has largely eliminated these diseases in the United States.
“They’re on a mission—like missionaries—to convert people,” explains Conran, who vaccinated her 6-year-old son. “I’ve talked to two or three, and it’s always the same thing: They’re going on about big pharma and how they put all these metals in vaccines.”
One local mom blames her son’s autism on vaccination, a story that still incites fear among neighborhood parents even though numerous studies prove otherwise. And with more and more alternative publications and blogs online, it’s hard to squash those alleged connections, she theorizes.
“It’s getting more and more prevalent because of the myths that linger about what’s in the vaccines,” Conran says. “There’s this stubborn belief about what they’ve seen online.”
The key to reaching parents with these difficult-to-challenge beliefs requires an understanding of how they make the vaccination decision, says Brian Zikmund-Fisher, an associate professor at the University of Michigan School of Public Health, who studies health-related communication. He believes the vaccination decision is no different from any other: It involves the patient’s perceptions of risks and benefits.
Decades ago, most parents knew someone who had measles or polio, devastating diseases that were feared. The success of public health vaccination efforts has largely eliminated these diseases in the United States. Now, the benefits of vaccines seem minimal compared to the perceived risks. “I believe the core of the problem today is that the average parent sees no personal, tangible benefit,” Zikmund-Fisher says. “Vaccines are what the doctor tells you to do, and that’s a tough sell. We need to talk about the benefits: Why do we do this?”
“A disease that is anywhere in the globe can be carried by the guy behind you in Starbucks tomorrow.”
Outreach needs to communicate the benefits of vaccination, without pretending that risks don’t exist. Zikmund-Fisher points out that risk is involved in all our everyday activities—riding in a car, for instance, or playing sports—but the benefits outweigh the risk.
The recent loss of herd immunity in some communities, combined with the ease of travel, has changed the risk equation. Parents need to understand that their communities are no longer isolated and, therefore, safe from these diseases.
“The Disneyland example drives home the reality that a disease that is anywhere in the globe,” he says of the outbreak that has sickened 133 people from seven states in two months, “can be carried by the guy behind you in Starbucks tomorrow.”
Pediatricians on the Front Lines
With little formal guidance in medical school and training programs, pediatricians must navigate their own course to changing parent’s minds.
Oakland family medicine physician Ashby Wolfe says she tries to convey the emotional component that’s sometimes missing from disease discussions. Wolfe tells patients about her experiences earlier in her career, when she saw two cases of Haemophilus influenzae Type b, or Hib. The potentially life-threatening bacterial infection swelled the children’s small airways so severely that they couldn’t breathe. Since the use of the current vaccination for Hib became widespread, she hasn’t seen another case.
In the United States, before the Hib vaccine became available, about 12,000 children a year got Hib meningitis with as many as 600 dying from it, according to the Centers for Disease Control. As many as 4,000 experienced life-long disability including blindness, deafness or mental impairment.
“It’s often difficult for physicians and public health to be convincing if there isn’t a story or experience from the personal side, something to give an example of why this is important,” she says. “Science can be impersonal and we, in the health field, need to work to make it real and convincing.”
When patients tell Jay Lee, a Long Beach family medicine physician, they aren’t vaccinating, his first response is to sit down, look them in the eyes and say, “Let’s talk about it.” His goal is to understand the crux of their motivation.
“Vaccine hesitancy is a modifiable behavior,” Opel says. “We can make a difference.”
“Over the years, I’ve found when you start with numbers and science, you lose engagement, and their eyes glaze over,” he says. “When I say ‘why,’ it shows I care and better prepares me for what I need to stress.”
Once he establishes trust that he’s listening and cares, he helps patients understand the balance between benefit and risk, without negating that the risk exists. “I think fear plays a large role: the fear of potentially bad outcomes,” he says. “The truth is there is a risk, but it is infinitesimal relative to the benefit that vaccines confer.”
Doctors say the vast majority of parents who bring up some kind of hesitancy can be convinced at the least to have some vaccines on a delayed schedule. But a small portion of parents come in with their arms folded and position unwavering. Often, they are connected with a community that supports and validates their anti-vaccination beliefs.
When Santa Rosa pediatrician Corina Glover comes across those parents, she takes a long view. “What I try to do is find common ground,” says Glover, who practices in a region that the recent Kaiser study highlighted for its under-immunized clusters. “We both want to protect the child.”
In those cases, bombarding parents with information won’t change their minds. Glover makes sure they accept responsibility and know that if their child has a fever they need to be especially careful, call her and keep them away from other kids. She makes it clear that she does not agree with the decision and hopes that, as she develops more trust with them, the parents might change their mind.
Douglas Opel, an assistant professor in pediatrics at the University of Washington School of Medicine, wondered if some of these approaches to vaccine-hesitant parents worked better than others. He recruited 16 pediatric providers and videotaped more than a hundred vaccine-related interactions with parents.
Jason Glanz, an epidemiologist whose research focuses on vaccine safety and hesitancy, is working with Kaiser Permanente Colorado to evaluate a web-based resource devoted to vaccines
Even though he observed many different doctors, he found just two basic ways of addressing the topic. Some assumed parents would be fine with the vaccines and just stated what their child needed that visit. Others began more collaboratively, asking how parents felt about vaccinations.
The more presumptive approach resulted in more vaccinations.
Also, when providers pushed back and asked reluctant parents to reconsider an anti-vaccine stance, half of those who were initially resistant changed their mind. That “shows vaccine hesitancy is a modifiable behavior,” Opel says. “We can make a difference.”
Some researchers are testing the theory that conversations will sway parents. Jason Glanz, an epidemiologist whose research focuses on vaccine safety and hesitancy, is working with Kaiser Permanente Colorado to evaluate a web-based resource devoted to vaccines. The project recruited 1,200 pregnant women and new moms to use a heavily moderated site, located behind the Kaiser firewall, that features basic information on vaccines and ingredients, a blog, a discussion forum and a portal for questions. There are buttons to choose for asking an expert or posting comments. Participants can pose questions in an environment that might be less intimidating than an exam room.
Before crafting the approach, researchers surveyed parents about their decision-making process. They learned that some of the distrust surrounding vaccinations stems from a perceived lack of balance. Doctors would describe the benefits of vaccination but not the risks, even though they do exist.
In response, the site has a chart with each vaccine, its side effects and the frequency of side effects. “One strategy is just being up front about risks and prominently displaying them,” Glanz says. “We shouldn’t be afraid to describe them because adverse effects are rare and mild.”
Glanz can foresee some challenges with this open approach. Someone could ask about aluminum in vaccines, which a moderator could explain is less than the exposure in the environment, including breast milk. But then someone might counter that those things aren’t directly injected. “It becomes a game of whack a mole,” he says. “Every time you answer, another one pops up.”
Ultimately, though, he hopes being up front, responding quickly and acknowledging concerns could create the trust that is often lacking among vaccine-hesitant parents. The Kaiser site could become parents’ go-to, a place where they know the information provided is balanced and accurate, and health providers are responsive.
“The anti-vaccine group is very well organized—they go onto mommy blogs, stick to their message and plaster it all over,” he says. “This preys on fears and creates doubt. It would be nice if we could create a safe environment where parents feel their voices are heard and they could ask questions.”
Measles Outbreak Is Changing Attitudes
California is one of 20 states that allow parents a personal belief exemption to opt out of school-required immunizations—for now.
In 2012, Pan authored the measure that requires parents to talk with a health practitioner and receive the practitioner’s signature before seeking an exemption.
In February, Richard Pan, a pediatrician and state senator, announced he would introduce a bill that would no longer allow California parents to claim a personal belief exemption before their children enter school. In a news conference, Pan explained that there are areas of the state where vaccination levels are not high enough to contain dangerous diseases. That affects children who can’t get immunized because they’re too young or immune compromised.
“In too many schools, not enough children are immunized to prevent an outbreak,” he says. “Our current laws are not strong enough to protect them or us.”
In 2012, Pan authored the measure that requires parents to talk with a health practitioner and receive the practitioner’s signature before seeking an exemption. The law is credited with reducing personal belief exemptions throughout the state.
More legislation might not be a bad idea, says David Núñez, family health medical director of the Orange County Health Care Agency. Orange County is home to some of the highest rates of personal belief exemptions in the state and is ground zero for the recent Disneyland outbreak.
Orange County saw an 18 percent reduction in its overall rate for kindergarten exemptions, from 3.65 to 3 percent, after the 2012 measure, Núñez says. Some districts, such as Laguna Beach Unified, had a dramatic drop in exemptions, from 16.4 percent last year to 5.7 percent for the current school year.
The recent measles outbreak—and the publicity and repercussions that followed—has been enough to nudge some hesitant parents off the fence. Perhaps more than anything, the outbreak also has made it clear that relying on others to create herd immunity may no longer be a safe bet.
A school administrator in Redding has noticed the effects of the recent outbreak. Several families whose children attend Montessori Children’s House of Shady Oak have decided to vaccinate in recent weeks, says administrator Thomas Kaut.
Kaut notified all families whose children had not received the measles vaccine about the possibility of the school shutting if a student caught the disease—and the long-term ramifications of even a temporary closure on the small facility’s future. He also handed out measles information from the American Academy of Pediatrics.
While some parents did balk, several who planned to delay vaccinations got their children vaccinated that weekend. And one family who planned not to vaccinate at all changed their mind. Now, parents realize it’s only a matter of time before measles hits their area, Kaut says.
Physicians like Lee say they’ve been receiving multiple calls from parents who had been delaying immunization, asking if they can now receive the measles vaccine. That’s contrary to previous whooping cough outbreaks, which researchers have found did not lead to vaccine behavior changes.
That could be because measles—and the photographs of children covered in the characteristic red blotches—evokes a strong emotional reaction, which Lee describes this way: “‘Oh my god, that’s measles? Wow. Is this the 1950s?’”
The pleas from parents of immune-compromised kids also add to the overwhelming sense of community responsibility, as do some anger and name calling aimed at parents who won’t vaccinate their children on blogs and in social media and news articles.
“Families choosing not to vaccinate are feeling a lot of negativity and hate,” he says. “This isn’t the goal…the goal is to help create herd immunity. We’re all accountable for each other’s health.”
Ed’s Note: Kellie Schmitt writes for the California Health Report, where this story originally appeared.