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.