From Vaccine Tug-of-War to Parent-Pediatrician Dialogue
May 2016—As PCORI-funded studies produce results of interest to patients and those who care for them, we are updating the stories of those projects. Here is one such update.
What concerns lead some parents to not follow recommended schedules for vaccinating their young children against a range of serious diseases? In 2012, a PCORI-funded project set out to listen to parents of babies and toddlers, to learn how they make decisions about childhood vaccination. Now, the researchers have published their results.
Changes Parents Would Like To See
The researchers analyzed survey responses from 1,222 parents with at least one child less than 4 years old. “Of parents who had followed the standard schedule of vaccination, about half said that nothing in their vaccination experience needed improvement,” says principal investigator Tracy Lieu, MD, MPH, of Kaiser Permanente Northern California. “The rest most often said they wanted more vaccine information, especially on side effects and safety.”
Many of these survey respondents said they’d prefer to receive information before clinical visits, not at the doctor’s office. “It’s perfectly normal to say, ‘I’d like to get the chance to think this over,’” Lieu says.
As in other national studies, about 12 percent of the parents surveyed in this study had used nonstandard approaches to vaccination, either changing the timing of the vaccines or declining some or all of them. Among these parents, Lieu’s team reports, the top request to improve the experience was increasing choice. (When asked what choices they wanted, these parents most often selected answers related to which vaccines children receive, timing of vaccination, and availability of noninjectable options.) The second most common request was for better and more complete vaccine information.
Parents who used nonstandard approaches gave varying reasons for their choices. Those who declined all vaccines tended to be uncomfortable with some vaccine components. Others said they would accept all the vaccines but were concerned that too many were given at one time.
Lieu says she hopes pediatricians will take the study’s results to heart. “Even parents who are following the standard schedule are saying, ‘Gee, I would like better information about the side effects of vaccines,’” she says. “Now, the challenge for healthcare systems is to get the information to parents when they are interested in seeing it and have time to think about it.”
For the smaller group of parents who want more choice about when their children receive vaccines, Lieu says, doctors face a dilemma. Physicians want to make sure all children are vaccinated as soon as appropriate to protect both them and the broader public health. But she asks, “Should we remain focused only on the standard schedule? Or should we make some kind of alternative schedule, at the risk that vaccination coverage rates might go down because of missed visits or delays in receiving some vaccines?”
Regardless of the answer, Lieu says, doctors should remember that parents of young children are not monolithic in their views. “By taking into account each parent’s decision-making approach, doctors can tailor conversations more carefully to parents’ actual concerns,” Lieu says.
ORIGINAL FEATURE (OCTOBER 2013)
Jana Horne buys nutritious foods, brings her two young children to their pediatric check-ups, and takes other steps to ensure that they are safe and healthy. But when it comes to vaccines, the Manassas, Virginia, mother wonders if the nearly 20 immunizations recommended for children by their second birthday are just too much.
“Vaccines make sense to me,” says Horne, “but I fear that it may be wrong for such a small child to get several vaccines in a single visit.”
According to UNICEF, vaccines prevent the deaths of up to 3 million children worldwide each year. Almost all pediatricians see tremendous value in infant and toddler vaccinations compared to their low risks—most often only mild fever or soreness, although more severe side effects can occur on rare occasions. Pediatricians find that giving multiple vaccines during a single visit increases the likelihood that a child will receive the full set.
“Parents’ perceptions can be very different,” says Tracy Lieu, MD, MPH, Director of the Division of Research at Kaiser Permanente Northern California. Because many of the diseases that vaccines prevent are no longer an imminent threat, some parents focus on possible side effects. “The risk of serious problems is very small, but it’s enough to get parents’ attention,” say Lieu.
Although more than 90 percent of parents with children age 6 or younger have or plan to have their youngsters fully vaccinated, 77 percent harbor at least one concern about the immunizations, according to a recent survey by the US Centers for Disease Control and Prevention. One of the most frequent worries is the number of immunizations, up to five, administered in a single pediatrician visit, as recommended by national guidelines. Addressing such concerns is critical to ensure that parents continue to get their children immunized. “The issue of vaccines can be a tug-of-war between parents and pediatricians,” Lieu says.
Lieu is trying to turn that tussle into a dialogue between doctors and parents. She received a two-year PCORI Pilot Project award to study parent preferences in decision making about childhood vaccinations. “We want to make sure parents have the information they need and they are included in the decision-making process,” says Lieu.
That’s welcome news to Horne, who successfully negotiated an alternative vaccine schedule for her daughter Lily. “The pediatrician accommodated me, but I had to be pretty vocal about my demands,” Horne says. Lily received just one shot per visit, but Horne brought her into the doctor’s office extra times, so Lily still got all her shots by age 2.
The pediatrician accommodated me, but I had to be pretty vocal about my demands.Jana Horne Patient Partner
With the PCORI funding, Lieu plans to assess what kind of information parents would like and how to present it in a way that best assists them in making their decisions about immunization. “We don’t have a clear sequence of parents’ decision making,” says Lieu. “Parents complain there isn’t enough information to help them. Parents need more opportunities to engage in conversations and decision making.”
To begin the research process, Lieu’s team designed a series of open-ended questions and interviewed 24 Northern California parents selected from the Kaiser Permanente database. The team chose some parents whose infants and toddlers had been fully immunized on the recommended schedule and other parents whose children’s vaccination schedule had included delays.
The team is now analyzing the information collected in interviews that were, on average, 30 minutes long. Next, Lieu and her colleagues will prepare a more structured Internet-based survey that they will administer nationally.
Lieu plans to develop a classification system of “parent types” when it comes to vaccinations and ultimately provide information and decision-support tools that can help each type of parent have productive conversations with healthcare providers. For example, one set of information might be tailored to parents very suspicious of vaccines and another for those who feel more favorable toward vaccines but worry about side effects.
A six-member National Stakeholder Committee guides the PCORI-funded work. The committee includes a pediatrician, a public health official who focuses on immunizations, and a researcher who has studied national increases in hesitancy about vaccines. In selecting the three parent members of the committee, Lieu looked for people who had concerns about childhood immunizations but were still willing to have discussions with medical authorities.
She selected two parents whose families had experienced adverse reactions to vaccines and who were involved in national organizations that have raised questions about vaccination recommendations. She also selected Horne, who has recently made decisions about the immunization of her young children. “We wanted a parent who had accepted vaccines but who questioned their safety,” Lieu says. “The parents on the committee are asking us hard questions and really pushing us to focus,” Lieu says. “They’re saying ‘What’s going to come out of this at the end?’ and ‘How will it be useful?’ They’re more insistent in some ways than our researcher or public health colleagues.”
The parents also shaped the interview that the team administered. Lieu says, “Jana, in particular, gave us a lot of in-depth perspective about what it’s like to be a parent today and how she thought about the vaccine decision making. She was a very thoughtful guide in terms of the questions that were important and the kinds of experiences we ought to be asking about.”
The goal, says Horne, is “to give parents access to more information instead of leaving it to parents to chase down information on their own—and risk parents coming across nonfactual information about vaccines.”
At a Glance
Incorporating Parent Preferences in Decision Making about Childhood Vaccines
Principal Investigator: Tracy A. Lieu, MD, MPH
Goal: To provide parents with the information they want, fostering a dialogue with their healthcare providers about childhood immunizations.
Posted: October 28, 2013; Updated: May 12, 2016