Treatment for any serious medical condition can be daunting for even the most fearless adults. But for children who deal with serious illness, fear, anxiety and a lack of understanding can make it difficult for them to cope with their treatment.
Dr. Meghan Marsac, pediatric psychologist and assistant professor in the UK College of Medicine, saw how many parents and children struggled to navigate the stress and logistics of treatment.
“When I was helping kids and parents adjust to what life was like with pediatric cancer, there were a lot of things we were teaching over and over again,” Marsac said. “Parents wouldn’t know these things. You’re not supposed to have a kid with cancer.”
And so Cellie was born. Designed by Marsac during her fellowship at Children’s Hospital of Philadelphia, the Cellie Coping Kit was developed for children ages 6-12, and includes of a plush toy named Cellie, a deck of cards with coping and communication techniques, and a book for caregivers. The first Cellie kit was geared toward children with cancer, but has since been adapted for children with sickle cell disease, traumatic injuries and food allergies. A kit for eosinophilic esophagitis, an allergy condition that causes inflammation of the esophagus, is in the works, as is a kit for the siblings of children with illness or disability.
How Cellie helps
The kit is designed not only to comfort children during their illness, but also to provide them with the tools they need to understand their treatment and communicate their feelings.
The coping cards address various “stressors” children can face, including scary procedures (such as needle sticks), emotional stress and side effects of treatment such as nausea or hair loss. The kit also addresses how to manage situations such as missed school or playing outside. The caregiver book parallels the cards, giving parents the advice on how to address their child’s concerns.
“We reviewed the cards and that helped [our son] understand that some of the feelings he has are similar to other children here,” said one parent. “So he didn’t feel like he was alone.”
For example, the card in the child’s kit that addresses a fear of needle sticks lists several tips, including “squeezing Cellie tight and looking at Cellie until it is over” or “telling your nurse or parent a story.”
“The pain tips help me,” said one child. “The pain thermometer, the faces, and the belly breathing card…that helped me a lot.”
Working together to help families cope
Much of Marsac’s research is centered around developing and evaluating programs designed to help parents and children manage medical conditions and preventing long-term emotional impairment after illness or injury.
Cellie was initially developed to help Marsac’s pediatric cancer patients, but she recognized the need for coping tools for children with a variety of conditions. The Cellie Coping Kit for sickle cell disease shares many components with the cancer kit. The food allergy kit was designed after Marsac’s conversation with one of her students about the dearth of allergy resources for children.
Marsac and her team worked directly with doctors, nurses, psychologists, child-life specialists and families to develop the kit. Extensive research was conducted to determine what was most difficult for families when it came to navigating treatment and what medical teams could do to assist families. Families reported that the kit was a useful tool in promoting conversations about illness in the family.
“[Our daughter] just become more aware about [her condition] by reading the cards and asking a lot of questions,” said one parent. “Some of the things on the cards she didn’t understand before, so she has more of an education now.
“This is all the stuff we’ve been going through.”
Children who learn early how to discuss their illness are better equipped to manage it better as adults, Marsac said.
“We know that physical and emotional health are intertwined,” she said. “Our team’s goal is to support both parts of health, and the kits are designed to walk families through treatment.”
- When your child is sick or hurt, you want the best care possible. That’s exactly what you get at Kentucky Children’s Hospital. Learn more about our services.
- The Child Life Program at Kentucky Children’s Hospital provides play opportunities for sick children and their families. Learn more our Child Life Program.