They’ve probably heard the words: “Chemotherapy,” “Cancer,” and “Tumors.” But many children of adult patients aren’t clear on what the words mean and many are afraid to ask.
Jodi Bauers, a Certified Child Life Specialist helps alleviate those fears and offers advice to adult patients on how to best support their children. On the first Monday of each month, Bauers facilitates a support group for children of parents with cancer. The group meets at 5 p.m. at IU Health Simon Cancer Center.
“To kids, the unknown is the scariest part,” said Bauers who has worked in numerous settings as a child life specialist including an oncology camp for children who have lost a loved one to cancer. Often, the unknown can result in misinformation, she said.
“I once worked with a 13-year-old boy who was a bone marrow donor. He was sure his sibling got cancer by drinking from a pop can that was left outside overnight,” said Bauers. “He shared that he also drank from the pop can and thought he might get cancer too. Kids hear bits and pieces and make up their own reality. If we do nothing else, we can help them understand and clarify the illness,” said Bauers. She often breaks down the words into visuals – painting pictures for her young audience.
She speaks of cells as building blocks with various functions comparing them to Legos. “Usually the cells in our body get the message to stop, but sometimes one cell gets the wrong message. Cells may continue to grow out of control,” she says, explaining cancer. She describes chemotherapy as a medicine that attacks fast-growing cells like cancer.
“As a parent, your job is to protect your kids. Sometimes there is just hard stuff in life. Providing information to your child might conflict with your desire to protect them, but you also want them to trust that you are providing them with the truth,” said Bauers.
Using age-appropriate explanations is key to helping children feel part of the balance between the disease and the treatment. “You want to meet kids where they are and start by asking them what they already know. You don’t want to cause undo anxiety with too much information but you want to create an open dialogue. Many kids just want to know they can come and ask you anything – even hard questions.
With any illness in a family, there’s so little control but if you can help kids understand certain words, then they know what to expect,” said Bauers.
Support groups can help parents reinforce those messages. They also give children a safe place to express their fears and to relate to other children in similar situations.
Here are some additional tips:
- Talk to you medical team if you need help explaining something to your child.
- Set aside a specific time to talk to your child – free from cell phones and other distractions. Sometimes that might mean playing a board game or card game and talking while interacting.
- Recognize that kids cope differently. Just because they don’t act sad initially doesn’t mean they aren’t processing it.
- Different ages have different needs, but most kids want to know how the illness impacts their lives. How will they get to school? Who will be with them when you are at the hospital?
- With older children, be careful not to impose on them. Asking them to pick up the slack or do chores that can’t be done by the sick parent can contribute to stress.
- As much as possible, plan regular times together just to have fun.
“Parents should remember that knowledge is power,” said Bauers. “The more a parent can be open and honest about their illness, the better equipped a child is to become part of the healing process, part of the team.”
-- By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at T.J. Banes or on Twitter @tjbanes.