Why pregnancy forums are full of misinformation about health

Each year, as flu season peaks, medical professionals caring for pregnant women must prepare to combat flu vaccine misinformation.

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

As Simon alluded to, a 2018 study published in Clinical Infectious Diseases examined flu vaccine effectiveness and flu-related hospitalizations in pregnant women between 2010 and 2016. The researchers concluded that vaccination increased a person’s risk of being hospitalized with reduced by 40 percent. A separate study published in 2013 estimated that a pregnant woman’s risk of contracting a flu-related acute respiratory infection is cut in half. Indeed, research has shown that pregnant women are at greater risk of being hospitalized with pneumonia or being admitted to intensive care if they have not been vaccinated and have the flu.

“When you have the flu, your lungs have a harder time breathing [in pregnancy]’ said Simon. “And you need those lungs to breathe properly, to provide your baby with oxygen.”

Denise Jamieson, professor and chair of the Department of Gynecology and Obstetrics at Emory University School of Medicine, told Salon via email that there are often longstanding myths and misconceptions about the flu vaccine she’s seen in her patients.

“While the flu vaccine has been recommended during pregnancy for decades, only about half of pregnant individuals are vaccinated against flu each year,” said Jamieson. “I’ve heard a lot of pregnant people say, ‘Every time I get the flu vaccine, I get sick, so I don’t get it while I’m pregnant’.”

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

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

Despite research and recommendations that guarantee the safety of vaccines during pregnancy, if you search for “flu shot” in many online pregnancy groups, you will find plenty of pregnant women hesitant at the thought of getting vaccinated. And it’s not just the flu shot. When the COVID-19 vaccine finally came about, online pregnancy forums were immediately filled with misinformation about the safety of these vaccines. A Kaiser Family Foundation’s COVID-19 vaccine monitor published in the summer found that nearly three-quarters of women who were pregnant or trying to conceive believed or were uncertain about at least one of the COVID-19 vaccine myths that were included in the survey.

“More than two years into the pandemic, there is a surprising amount of confusion about vaccine safety for pregnant women,” Mollyann Brodie, executive vice president of the Kaiser Family Foundation, said in a statement at the time. “The fact that so many younger women mistakenly believe that the vaccines can cause infertility or that they are 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 misinformation about health and vaccines so common in online pregnancy groups designed to provide support? Why does misinformation prevail when the investigation is advanced?

“Disinformation is rampant in online forums because nobody checks it,” Simon said. “There is no accountability and no one edits.”

Andrea Vincent, an administrator of a Facebook pregnancy support group, told Salon as administrators that they often have to check misinformation in the group.

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

Vincent said she believes people seek medical advice from online support groups rather than asking their medical providers for a number of reasons.

“I think people want to be reassured 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 then they want the group asking, ‘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 that much of the misinformation that clouds pregnancy stems from “structural issues,” such as “excluding pregnant and giving birth and lactating individuals” from research. “And that’s a real shame, because when certain groups lag behind participating in clinical trials, there’s relatively less data.” But now more data is here.

Jamieson told Salon she believes there is often a reluctance to do anything during pregnancy, such as taking any medication or vaccines, in a misguided attempt to ensure they have done everything they can to ensure their babies are healthy being born. But this can often have the opposite effect.

“What is not appreciated is that by doing nothing and not getting vaccinated, the risks to mother and baby can be significant,” said Jamieson. “Pregnant people who have been vaccinated against flu can also pass on protective antibodies to the fetus; these protective antibodies are critical because they help protect newborn babies, who are too young to be vaccinated, against flu.”

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