Flip No. 63

Pairing Children’s Book Illustrators with Evidence

How age-appropriate books and posters can help children understand their treatments and choices.

By Erin Moore

Erin Moore has a five-year old son with Cystic Fibrosis. The condition causes thick mucus to accumulate in the lungs, which causes chronic respiratory infections. In the summer of 2015, her son’s doctors wanted to assess if the condition had damaged his lungs. They suggested a CT scan and MRI.

In order for the tests to work, her son would have to stay still inside two hulking machines. The five-year old had questions: Why did he have to get a CT scan and an MRI? Were they going to hurt? Moore had reviewed the literature. As clearly as she could, Moore explained the basics of the Institutional Review Board (IRB) materials: what the machines do, their risks and benefits, and the research about them. It was during this process that Moore realized the potential for a Flip.

Moore’s son was the patient, and he was perceptive enough to ask questions about what he was about to go through. Moore realized, “he deserves a smart and honest answer.” Why wasn’t there IRB-like literature aimed at children? “If we could involve patients at a younger age understanding why they participate, what exactly is going to happen, how it will feel, and how it will help them,” wrote Moore on her blog 66 Roses, “maybe it will give them a deeper understanding of their disease, a deeper confidence in the teams that care for them, and a deeper appreciation for the entire system that is in place to keep him well.”

In that moment, wouldn’t it have been wonderful for Moore to pull out an illustrated poster or picture book that explained the machines, how they work, what her son could expect, and why that kind of test is important? By pairing a children’s book illustrator with hospital staff to co-create lively, clear, and evidence-based books and posters, parents can help children understand why they’re asked to lie still and how gaining CT and MRI images can benefit their health.

 

Would you like to get involved? Leave your thoughts on this Flip in the comments. What other applications can you see for illustrated age-appropriate IRB literature? What elements (people, skills, knowledge) need to come together to make this happen? Join the discussion below or on Twitter at #KidsIRB.

 

Comments

  • Sami Kennedy

    This is AWESOME. I’ve been thinking along similar lines for a while. As a kid and teen (and even still sometimes!), I was always asking why I had to take my medicine and how it worked and why it sometimes made bad things happen too – and have found in my more recent research that resources to explain these things to kids are just not as prevalent as they should be. And certainly not in a consistent format that can be further customized to talk about specific conditions (ie – “What is an MRI?” for any kid, and then the ability to customize it to say, “What is an MRI for a kid with CF?”). Definitely have dreamed about having kid-friendly (and, honestly, another set for teens, too!!) visual guides that simply but honestly and comprehensively explain why and how medical things work and are important – without “dumbing it down” in a way that says “you’re too young to be curious about this.” Curiousity should totally be rewarded because it stimulates engagement! Especially in pediatrics, where we want and need to have our children with chronic conditions to grow up understanding the importance of self-care and participatory health. Would love to be involved in building this however I can, both as a patient advocate and med student passionate about making pediatric care better.

  • Eva Starrak

    I love this Flip! Have you considered combining the story narrative with a coloring book?

    • Erin Moore

      Thats a great idea!