Why pregnancy forums are rife with health misinformation

Each year, as flu season peaks, medical professionals who take care of pregnant women have to gear up to combat misinformation around the influenza vaccine.

“We’ve always seen fear or distrust of not wanting to get a flu vaccine in pregnancy,” Melissa Simon, an obstetrician gynecologist at Northwestern Medicine, told Salon. “Every year we have to be very consistent and start that very clear, consistent messaging that the flu vaccine is indeed very well studied in pregnancy, it’s very safe in pregnancy, and it actually improves outcomes.”

As Simon alluded to, a 2018 study published in Clinical Infectious Diseases examined the influenza’s vaccine effectiveness and flu-related hospitalizations in pregnant women between 2010 and 2016. The researchers concluded that getting vaccinated reduced a person’s risk of being hospitalized by 40 percent. A separate study published in 2013 estimated that a pregnant woman’s risk of getting a flu-related acute respiratory infection by one-half. Indeed, research has shown that pregnant women have a higher risk of getting hospitalized with pneumonia or being admitted to the intensive care unit when being unvaccinated and having the flu.

“When you have the flu, your lungs have a harder time to breathe [in pregnancy],” Simon said. “And you need those lungs to breathe well, in order to help give oxygen to your baby.”

Denise Jamieson, professor and chair of the Department of Gynecology & Obstetrics ast Emory University School of Medicine, told Salon via email that there have often been long-standing myths and misconceptions about the flu vaccine that she’s seen in her patients.

“Although the flu vaccine has been recommended in pregnancy for many decades, only about half of pregnant persons are vaccinated for flu each year,” Jamieson said. “I have heard many pregnant persons say ‘Whenever I get the flu vaccine I get sick, so I am not getting it while I am pregnant”.'”

Jamieson said the influenza vaccine can cause mild side effects, but it’s not true that it makes a person sick with the flu.

“In addition, there are many long and strongly held beliefs about the flu vaccine in families and communities,” Jamieson said. “For example, my patients will say ‘My mother never got vaccinated and she told me not to get vaccinated, particularly not in pregnancy.'”

Despite research and recommendations ensuring the safety of vaccines in pregnancy, if you search “flu shot” in many online pregnancy groups, you will find plenty of pregnant women expressing hesitancy at the thought of getting vaccinated. And it’s not just the flu shot. When the COVID-19 vaccine finally came to exist, online pregnancy forums were immediately fraught with misinformation about these vaccines’ safety. A Kaiser Family Foundation’s COVID-19 Vaccine Monitor published over the summer found that nearly three-quarters of women who were pregnant or trying to conceive either believed or were unsure about at least one of the COVID-19 vaccine myths asked in the survey.

“More than two years into the pandemic, there’s a surprising amount of confusion about the vaccine’s safety for pregnant women,” Mollyann Brodie, a Kaiser Family Foundation Executive Vice President, said in a statement at the time. “The fact that so many younger women incorrectly believe the vaccines can cause infertility or that they’re not safe for pregnant women highlights the real challenges facing public health officials.”

It’s a question medical professionals have long been fixated on: why is health and vaccine misinformation so common in online pregnancy groups that are meant to provide support? Why does misinformation prevail when the research has advanced?

“Disinformation runs rampant on online forums because there’s no one checking,” Simon postulated. “There’s no accountability, and no one’s editing.”

Andrea Vincent, an admin for a Facebook pregnancy support group, told Salon as admins they often find themselves having to monitor misinformation in the group.

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“We’ve always had a lot of rules and they’ve had to increase in the last few years with the world changing,” Vincent said. “But I think that’s helped us keep misinformation out and we really try to keep talking a lot behind the scenes about what we allow and what we don’t.”

Vincent said she believes that people seek out medical advice in online support groups, instead of asking their medical providers, for a couple of reasons. 

“I think people want reassurance that it’s normal, so they don’t have to go to their doctor or they think it’s easier to go to a group, or sometimes people have gone to a doctor and want to then ask the group, ‘this is what my doctor says, has anyone done this?'” Vincent said. “There’s a lot of misinformation out there, and it’s scary to have a baby.”

Previously, Simon told Salon the fact that a lot of the misinformation clouds pregnancy stems from “structural issues,” such as “excluding pregnant and birthing and lactating persons” from research. “And that’s really unfortunate because when certain groups are left behind from being included in clinical trials, there is relatively less data.” But now, more data is here. 

Jamieson told Salon she believes there is often a reluctance to do anything in pregnancy, like take medications or vaccines, in a misguided attempt to ensure that they’ve done everything to ensure their babies are born healthy. But this can often have the reverse effect.

“What is not appreciated is that by doing nothing, and not getting vaccinated, the risks to the mother and baby can be substantial,” Jamieson said. “Pregnant people who are vaccinated for influenza can also pass protective antibodies to the fetus; these protective antibodies are critically important because they help protect newborn babies, who are too young to be vaccinated, from getting sick with influenza.”