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Kids Need to Be Kids: Even in the Hospital

I am constantly intrigued by all the different things people do at a hospital. From social workers to computer experts, all kinds of people contribute to the workings of a hospital. When you look beyond the direct care provided by doctors and nurses, you find a broad and complex network of people providing a range of resources that give patients more than just medical attention.

Children who are chronically sick do better when required to keep up with schoolwork.Megan Shifflett’s role as an educational consultant exemplifies this. When I met with her, she had just returned from the National Hemophilia Conference, where she had presented to students and parents on how to be successful in college while managing a bleeding disorder.

Whether working with children with renal problems, cancer, hemophilia or sickle cell disease, Shifflett’s job is to help kids with serious medical issues continue their education as much as possible. As a member of the Hospital Education Program faculty employed by the Charlottesville City Schools, Shifflett helps “keep children progressing educationally so they do not fall behind.”  If a child recovers and returns to school “not being able to read or write, then we’ve done a disservice to the student, the family and the community. Families and schools are both very appreciative of what we do.”

Much of what Shifflett does for her caseload of 150-200 kids is facilitate communication between the medical staff, parents and school personnel. She sees some children “every time they are in clinic, and I talk to them, ask about schoolwork and work load. Then I call the school, find out if there are any new concerns and what the medical team or family may need to do to help the student be successful.”

This service “helps relieve family stress,” Shifflett says. “Obviously parents want to communicate with schools as much as possible. But sometimes school becomes a low priority in the midst of treatment. Parents may not have the time or energy to deal with the system in additional to the many other responsibilities involved in having a child with a chronic illness.”

That’s where Shifflett steps in. With a background as a special education teacher, she has the ability to talk with teachers about students’ needs. “It might be a minor intervention like a teacher letting a child use the bathroom when needed,” she says. “Or it might mean talking to the school to find out what work can be compacted, classes put on hold or what tutoring options are available.”

Shifflett also finds herself educating school nurses and teachers about medical illnesses, so they know how to best to respond to issues in the classroom. “A normal nosebleed might last 5 minutes,” she explains. “For a student with hemophilia, it might last up to 20 minutes. If it still does not stop, the doctor will need to be contacted.”

The Healing Power of Normalcy

While talking, Shifflett gives me a tour of what physically constitutes the Hospital Education Program – she tells me about the teachers she works with as she shows me the colorful preschool and classrooms outfitted with technologies appropriate for various age groups.

I’m impressed; these rooms look like they could belong to any normal daycare or school building. According to Shifflett, that’s the point – normalcy. Whether speaking of schoolwork or hobbies, Shifflett constantly sees that “kids involved in normal activities seem to do better. It’s good for their social and emotional health.” She explains, “I think when kids become sick in general they want to feel normal, so they do like to engage in school. I asked one kid if he liked school after he had been in the hospital for a week and he said, ‘I didn’t before, but I do now. I can’t wait to go back!’”

Even with that enthusiasm, helping kids stay current with their work is not always an easy task. “I have kids who go to school every day while undergoing cancer treatment,” which can lead to medical and academic challenges. “There’s treatment changes and different phases, some are really intense, some are not so intense. Based on those changes, school might look different. If a student is hospitalized for a fever for 3 weeks or homebound with a tutor for 2 weeks due to extreme fatigue,” academic expectations have to shift.

Kids With Chronic Illness Still Need to Be Kids

Which means Shifflett also has to educate parents. “Kids need to be kids, even when they have a chronic illness,” she says. But parents “can be overprotective. Children do well when expectations remain consistent and appropriate.” Often Shifflett finds herself encouraging parents to hold their children to the same behavioral standards they had before they got sick.

“If they couldn’t eat ice cream or play video games unless they did their homework before, that should stay the same. If all of a sudden they can have ice cream at every meal, they think ‘I’m really sick.’ Expectations that are reasonable and appropriate allow kids to be the best kids they can be. They are resilient. And they will always be kids. If a kid likes to play practical jokes, they often still play them in the hospital.”

That’s her biggest challenge: Helping school personnel and parents “recognize that these are still kids, with kid needs, and we need to address those.”

Those needs can include stress relief and physical activity. “If a child, for example, used to play basketball, now they can’t – what’s a substitute? What’s your new activity? Last week a young man had to stop certain activities because of a bleeding disorder. He was told he could not ride a bike or play baseball. The mom didn’t know what to do. So we had to brainstorm a list.”

The Rewards of the Job

Is the job rewarding? Shifflett gives a definite yes.

For one thing, “The medical team I work with wants the best for kids and wants them to have as normal life as possible. I have a shared office workspace with the doctors, nurse practitioner and social worker. We all work together. We are all aware of patient needs.”

And, of course, there are the successes. “I work with kids who get kidney transplants – I see them go back to school, running and jumping; being kids, that’s amazing. I see kids graduate from high school with a chronic illness.”

For Shifflett, the rewards come on a daily basis. “I have some kids who go to school everyday. These kids show a lot of courage. In the face of adversity, they say, ‘I can do this.’ This is very inspiring. I have an awesome job; it gives me perspective. I’m very fortunate to work with such courageous kids.”

Learn more about the UVA Children’s Hospital services.

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