At the Children’s Hospital of Georgia, when your child is scared about having surgery, is facing a cancer diagnosis or has to rush to the emergency room, there’s someone there who can ease those fears.
Not just for your child, but for you, too.
“It’s called ‘contagion theory,’” explained Kym Allen, manager of child and adolescent life services and hematology/oncology child life specialist at the Children’s Hospital of Georgia. “When parents are nervous and anxious about a procedure, kids read that. They think, ‘If mom is worried, then I need to be.’
“So part of our job as child life specialists certainly is helping parents lessen their anxiety about what their child is going through.”
“What exactly is going to happen?”
Most of us know what child life specialists do. For example, they can explain, step by step, to a child what will happen when they need surgery: The child will go back to a room, have their blood pressure and temperature checked, take some “silly” medicine, then go back to another room where they will get “sleepy” air and take a special nap.
Or, child life might prepare a child to get an IV, talking about how a “straw” goes into the vein.
“Parents are listening to all of that, too, and learning,” said Allen. “And many of them tell us that it helps them to understand the intricate steps that their child will go through as well.”
Which is a huge help, since parents then feel more comfortable answering their child’s questions or calming fears about a procedure, after listening to how a child life specialist explained it.
“What do I have?”
One of the hardest things for any parent is to have to explain to a child that they have cancer or another life-threatening or life-impacting diagnosis.
“This is something parents usually want to do themselves, but we can help them with the right words about how to explain things,” said Allen.
A child life specialist can also walk parents through some of the fears and misconceptions a child might have depending on his or her developmental age. For example, said Allen, preschool children often have what’s called “magical thinking,” which means they could think that they’re in the hospital because of something they did or didn’t do. “We don’t want a child to think that because they didn’t clean their room last week and got in trouble that now they’re in the hospital and are diagnosed with diabetes,” said Allen.
Younger children also don’t have a good concept of time. So if a child needs to stay in the hospital for two days, Allen said it’s best to explain it as, “OK, you’re going to need to sleep in the hospital two times.” Or, if a surgery or other procedure will take two hours, a parent might explain that it will take as long as two episodes of “Dora the Explorer.”
“I want what I want!”
It’s just human nature to want to give your child who has a long-term chronic illness or who has been faced with a tough new diagnosis anything he or she wants.
But these children may need rules now more than ever, said Allen, who said that child life can also help coach parents through behavioral issues.
“We help parents understand that it’s OK to reinforce rules,” she said. “For example, you don’t want your child to speak disrespectfully to a doctor. So it’s OK to say, ‘You don’t have to like what your doctor says, but you have to be nice to them.’”
Also, if your child feels up to doing their homework but just doesn’t want to, don’t give in. “Say a mom lets a child do whatever he or she wants, but she has never let her child do that before. If all of a sudden all the rules are out the window, kids can feel like something really bad is going to happen,” said Allen. “We’re just trying to encourage parents to know that it’s still important for kids to live in a world of rules. Just because they’re sick or in the hospital, those rules don’t go away.”
A time for mom, dad and caregivers
At the children’s hospital, child life specialists are there to help prepare children for surgery, cover the emergency room and inpatient units, and float in the clinics to help families going through invasive or major procedures or big diagnoses.
But many parents may not know that child life also organizes programs and medically supervised camps to give parents some respite from caring for a chronically ill child—and a chance to connect with other parents going through the same experience. These camps and programs include:
- Camp Rainbow, for children with cancer between ages 4 to 16 and their siblings
- Camp Joint Venture, for children with juvenile arthritis or other rheumatology conditions between ages 6 to 18
- Camp Strong Heart, for children with a cardiac-related diagnosis between ages 5 to 17
- Camp Sweet Life, for children with diabetes between ages 7 to 16
- Share and Care, for children newly diagnosed with a chronic illness and their families
According to Allen, many parents also talk to child life with their own fears and concerns while they’re in the hospital with their child or waiting for a child to come out of surgery. “I think we offer an opportunity as someone who is a non-medical person that the family feels comfortable opening up to and chatting with,” she said. “Then the responsibility is on us as to whether it’s something we should encourage the parents to share with a medical provider or for us to share so that we can help clarify something for a parent.
“All of these things happening to a child is nothing anyone would choose, but we can help families adjust to that. It’s about how can we make this a positive, and how can we learn from this experience and bring the family closer together.”