Childwise is a medical advice column for parents of children ages birth to 21.
By Kathleen Ganster
Coping with a loved one’s terminal illness is tough for anyone, but for a child, the situation can be even harder.
Hilda Schorr-Ribera, Ph.D., psychologist who works with children’s support groups through the Cancer Caring Center of Pittsburgh and has a private practice, often works with children dealing with a parent or grandparent’s illness. She offered Childwise several tips for helping children get through these tough times in their lives.
For brevity sake, I will refer to all the illnesses in this article as “cancer,” but the tips and practices suggested can be used in dealing with any terminal or chronic illness. For the same reason, I will refer to the loved one as “parent” although the loved one could be a grandparent, sibling or other family member or friend.
“Be honest and open. Children hear the word ‘cancer’ and they haven’t a clue what is going on,” said Schorr-Ribera. Even if parents think they are keeping the child safe by not discussing the illness, Schorr-Ribera said the child will hear discussions and think the worst.
“Say more rather than less, but in a way they can understand. And try to remain positive,” she said.
When she works with children in her office or through the Center, Schorr-Ribera often talks to the children about what an illness is, referring to books about the body, drawing and answering questions.
“I try to explain what a disease is, what a cell is and explain it so they understand as best they can,” she said, “Most of all, I tell them that it is a disease they can’t catch, that they can still give mommy or daddy lots of hugs.”
If appropriate for the situation, Schorr-Ribera will also talk about the different types of treatment so the child has an idea of what is happening to her parent.
“I’ll tell them the doctor uses lots of ways to try to get rid of the disease. He may use a light, which is radiation, he may cut it out, which is an operation or he may use a medicine, which is chemotherapy,” she said.
Schorr-Ribera stays positive with the children and urges parents to do the same. “Unless we know the end is very close, I try to keep up-beat. You never know what may happen,” she said.
Keeping an open line of communication with the child is essential said Schorr-Ribera and allow the child to express sadness, anger and confusion – all feelings that are normal for the child to feel.
“Help your child feel comfortable expressing their feelings. And don’t be afraid when they are expressing these things. If they hold it in, it could be years later when these feelings show up again,” she said.
And don’t worry if the child appears unconcerned or walks away while you are talking about it.
“They may not be ready to talk about it,” she said.
Schorr-Ribera often uses “substitutes” such as a doll or stuffed animal when working with the child – the child will often use the toy to express his own feelings, she said. She also suggests using art supplies with children for them to express their feelings.
Be alert to behavior changes that may mean more serious issues such as drug or alcohol use in older children, academic issues and self-destructive behavior. This is also a time to alert teachers and guidance counselors to the parent’s illness so they can be aware of changes in behavior with the child, but don’t talk to them in front of the child.
Support groups for children are good for both them and the parents, said Schorr-Ribera.
“They learn they aren’t alone and other kids are going through the same thing. It is also helpful for the parents who talk while they are waiting for their children – they talk over things as well,” she said.
If death is near or if the loved one dies, children need to say goodbye.
“They can still say good-bye after death, but they need the chance to do it in some way,” she said, “I tell them that the love from their parent or grandparent never dies, the body dies, but not the love.”
Most of all, parents should remember they aren’t alone in helping their child get through these difficult times — which are also difficult for them.
“Reach out. If you are religious, reach out to your church. Reach out to friends, reach out to support groups,” she said.
The Cancer Caring Center offers support groups and services for families dealing with cancer. For more information visit www.cancercaring.org or 412-622-1212.
Questions or suggestions for future Childwise columns? Contact Kathleen Ganster at firstname.lastname@example.org.