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COMMUNICATING WITH A CRITICALLY ILL CHILD
Parenting Strategies
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Be honest and reassuring in an age-appropriate way.
You should always tell a child the truth when talking about his illness, but you may need to modify it in a way that fits your child. "Being honest doesn't mean kids need to know everything," says social worker Mary Mathews, director of family programs at Children's Memorial Hospital. "Every child should be given an explanation in a developmentally appropriate way. You can reassure your child that a parent or caregiver can handle this, without lying."
Describe the illness using simple concepts.
Pediatric oncologist Dr. Stewart Goldman recommends that parents explain the condition or procedure in terms children will understand. "You can let a child (with a brain tumor) know that she has a mass in her head and that's why she's having these headaches. It's not because she did something bad; it's the mass. And that's why she's having this surgery. You can reassure her that the doctor's going to give her medicine so it won't come back. And that's the absolute truth, but a little softened in an age-appropriate way. It's more effective than saying 'the prognosis is 44%.' "
Talk to your doctor about who should deliver the news.
If possible, the parents and the doctor should determine who should tell the child about his condition, because one of the reactions to bad news can be anger. "I would rather have the child be angry at the doctor, or angry at medicine, than to take that anger out on the parents," reports Dr. Goldman. "If the parents hear me say it to the child, they can pick up the pieces after I leave and work through it -- after the initial shock of whatever the news is." Adds social worker Mary Mathews, "Some parents may prefer to deliver the news themselves, or have to do so, due to logistics. Therefore, whenever possible, I recommend that parents and doctor confer before speaking with the child and decide what's most appropriate."
Give parents and children time to ask the doctor questions.
Kids don't want to be left in the dark and need to be part of the discussion about their care. You might tell your child that at times you will speak to the doctor privately, but that he will have his chance too. Dr. Goldman tells every pediatric patient, "There may be a time when I'm going to talk to your parents by themselves; it might be boring for you and they may want to talk privately. But I'll give you the same opportunity and I promise we'll summarize what I talked about."
Most kids are very practical and they want practical information.
In general, they will want to know:
  • What is going to happen to me?
  • What are you going to do to me?
  • Where am I going to go?
  • What will it feel like?
Allow yourself and your child some time to accept this new reality.
The first stage in facing a critical illness is acceptance. Give your family time to let this news soak in, and realize that kids will deal with it in different ways. Explains Dr. Goldman, "I tell people that you first need to accept that your life has changed, that you are faced with a catastrophic challenge, and that you need to acknowledge what you're up against."
Then, get back to life as best you can and maintain routines.
Once you've accepted the news, the hospital advises parents to move forward and maintain whatever routines are possible. The ability to do this will depend on the health and age of the child. Your child will need structure and normalcy at this stage, reports Mary Mathews, "An out-of -control sick child is awful for the parent, the child, and the relationship, and there won't be any joy. Even when there is an awful illness there can still be joy."
Humor helps regain a sense of normalcy.
Even life with critically ill children can be approached with humor. Dr. Goldman advises parents to tell children who are old enough to understand, "'You know you've got this tumor and for the next three weeks, go get every gift from people you can. But at the end of three weeks, if your job is to pick up after the dog, you pick up after the dog; if your job is to make the bed, you make the bed; if you are going to school, you go to school because we are doing this for you to be a normal person.' And that's my joking way of saying, 'This is bad, we realize it, we are all behind you.' But after that, kids want to be normal, that's what they want more than anything else and we have to give them permission to be normal."
Don't give up on maintaining behavior and responsibilities just because your child is ill.
It's important to reinforce limits, to expect that your child will do her homework and fulfill her family duties if her health allows. It's even okay to discipline a critically ill child. "It may scare a child if she can suddenly get away with everything. There are also practical reasons to keep limits, because you need your child to respond to you," advises Mary Mathews. "Don't focus so much on the illness that you forget to parent your child. Children still need to have time-outs and get grounded. You don't want to trade in a potentially curable illness for an incurable character or personality."
Take your cues from your child. Communicate but don't suffocate.
Many children know what's going on inside their bodies without your telling them. According to Dr. Goldman, "You don't want to be the mother or father who says `How do you feel? How do you feel?' all the time, because that makes children crazy. But, after they have digested information, children do need an opportunity to talk about it." Mary Mathews recommends that parents "be ready when the child is ready, addressing the need when they are ready to hear it. But if all you talk about is illness, it becomes your child's identity."
Don't get so consumed by your child's illness that everything else goes on hold.
You will need to maintain a part of your identity that is not related to your child's illness. This can be challenging if you are also your child's nurse and teacher. But you still need to go out for dinner if you can, have babysitters and plan special activities with all your children. If you find your child's illness taking over all aspects of your life, it can help to go for counseling to learn how to manage the situation. Sick children can feel guilty if life stops because they are not well.
Don't isolate your child from life unless your doctor tells you to.
Don't give your child the impression that no one can touch or go near him because of his health. Let your in-laws and friends visit, and maintain as normal a life as possible. It's not necessary to over-protect your child from germs unless directed by your doctor. Dr. Goldman reminds parents that "if you throw the dog out of the house because you're afraid of germs, and if you don't let your child roll in the dirt, you'll have a spoiled, obnoxious kid."
Be prepared for some regression.
You can anticipate that each time a child goes through a new developmental stage, there may be some behavioral regression regarding the illness. As a result, including them in their treatment plans is essential.
Stay connected with your other children and talk to them about how they feel.
Siblings are deeply affected when a child is critically ill, and it's important to give them as much attention and understanding as possible. You also need to explain details to them and check in on how they're doing. Many siblings believe they may have caused another family member's illness -- and parents need to remind them that this is not true. "One time I had a kid let on that he always thought he caused his brother's tumor because he was really mad at him, and he wished something bad would happen to him," remembers Dr. Goldman. "This sibling needed to know that he didn't cause his brother's illness and he needed to know that he's still special."
Sources:
Dr. Stewart Goldman, Pediatric Oncologist
Medical Director of Neuro-oncology

Mary Mathews, Social Worker
Director of Family Programs
This information is not intended to be a substitute for professional medical advice. Please consult your health care provider about diagnosing or treating health care problems.