KIWI: Kids Inquire, We Inform

Helping children and teens cope with a parent's cancer

A cancer diagnosis can create a variety of questions for patients who have children. Kids Inquire, We Inform (KIWI) is a program for patients and caregivers to answer these questions and provide tools to help children and teens cope with a parent's cancer.

Whether you're wondering how to tell your child about your diagnosis, treatment, progression or recurrence, there are quite a few things to consider before beginning these important discussions.

To start, think about your child's age and developmental stage. Some children are too young to verbalize questions and others may be too afraid to ask. Also, what does your child already know about cancer?

Keep reading to see questions frequently asked by patients and caregivers.

Contact Social Work

Phone:
713-792-6195

Locations:
Main Building, Floor 2, near The Park, B2.4650
Mays Clinic, Floor 2, near the Tree Sculpture, ACB2.1508

Hours:
Monday through Friday
8 a.m. to 5 p.m.

What does the research say?

It's common for parents to protect their children by withholding information that may be upsetting, but research shows the following:

A parent's cancer diagnosis affects a child whether or not the child is informed of the condition.
Anxiety levels are higher in children who aren't informed about their parent's condition, compared to children where the issue is discussed.
For parents of teenagers, an important aspect of coping is ongoing communication between the teens and their parents during the course of the illness.

So, what does this research mean to parents? Simply put, it means that honest, age-appropriate communication is best.

How do I talk to my child about cancer?

First, it's crucial to say the word "cancer." This is essential so the child will not associate the parent's diagnosis with another illness children can catch, like the flu or a cold. The following are common questions many children have, and they're important points to consider while talking with your child:

Can I catch cancer?
How does cancer happen?
Is it my fault my mom or dad got cancer?
Will my mom or dad die from cancer?

Remember that children may not ask these outright, but many will be wondering about them. Because children pick up on social cues, they may sometimes create scenarios in their heads far worse than reality when not given honest communication about what's happening.

Honest and age-appropriate communication with children models the behavior that it's OK to ask and talk about cancer.

What behaviors should I watch for?

If your child has exhibited behavior changes since a cancer diagnosis in the family, it may be a sign they're anxious but not talking about it. Some behavior changes to watch for include:

Regression, such as reverting back to thumb-sucking, bed wetting, etc.
Depression or excessive sadness
Decline in grades
Anger or outbursts
Physical complaints, such as frequent headaches or stomach aches
Withdrawal

Many of these behaviors are common and age-appropriate, but you might want to seek additional support if the changes are associated with the timing of the diagnosis and are unusual reactions for your child. Also, be sure to inform your child's teachers and school counselor about your cancer, as they can help watch for behavior changes and provide support when needed.

Support/Resources

The KIWI program has three components - Kid Kits, CLIMB®, and "Kid to Kid: Your Parent Has Cancer." For more information about KIWI, how to talk to children about cancer, and/or children's coping, contact the Department of Social Work at 713-792-6195 or tell your doctor or nurse that you would like to speak with a social work counselor.

Kid Kits

Backpacks containing information and tools for children and parents to assist in learning about cancer and healthy ways to cope.

CLIMB®

Children’s Lives Include Moments of Bravery - support program for children and teens coping with a parent's cancer. The program provides support groups for children, teens, and parents.

Learn more

Kid to Kid: Your Parent Has Cancer

Video providing information for children about cancer and answers to common questions kids have about a parent’s diagnosis and treatment.

Cancerwise Blogs

When a parent has cancer: Helping teens and kids cope

BY Laura Nathan-Garner

A parent's cancer diagnosis can turn a child's world upside down, no matter how young or old the child is.

But coping with a parent's cancer diagnosis can be especially difficult for teens, tweens and even younger children.

Below our social work counselors April Greene and Wendy Griffith answer questions about parenting through cancer and helping kids and teens cope with a parent's cancer diagnosis.

What's the best way to talk to kids about cancer?

No matter what your prognosis is, it's essential to talk openly and honestly with kids. If you're telling your kids for the first time, try to have this conversation in a private space where you can focus on the discussion and be close enough to physically console your kids if needed.

Children tend to think in very concrete terms and like to know what's going on and what to expect. If they ask something that you don't know the answer to, it's okay to tell them that you don't know and that you will work on finding the answer. The most important thing is to communicate openly, honestly and frequently.

Should I use the word cancer?

Even with really young kids, it's important to use the word cancer and explain to them what that means.

Keep in mind that kids often think that cancer equals death. They may not be talking about it or asking about it, but they are almost certainly worried about it. So it's crucial to be honest and open with them and address that fear.

We recommend using the 5 C's when talking to kids about cancer:

Say that it's cancer.
Tell your kids, "You didn't cause it. You can't catch it. You can't control it."
Also, tell your kids that you can still spend quality time together, participate in care, still be a kid, have fun, etc.

Any tips for talking to preteens and teens?

The same basic strategy works, but teens and preteens usually want more information and will probably ask more detailed questions.

Since they are able to have a better understanding of what's going on, it's okay to let them guide the conversation.

What if my teen doesn't want to talk?

If your teen doesn't want to talk or seems withdrawn, don't assume that they don't care or aren't interested. They're probably internalizing their feelings and may just need some more time to process. They may also prefer talking about their thoughts and feelings to friends.

Some teens may start to engage in risky behaviors like sex, drugs, smoking or alcohol after a parent's cancer diagnosis. This is typically the age when children begin to engage in this type of behavior anyway, so it's very important to monitor these behaviors as teens can be at a heightened risk during this time. If you notice that these behaviors are becoming harmful or habitual, it may be necessary to seek help.

This is also why communication is so important. Verbal and non-verbal cues can be very helpful and will tell you a lot about your teen's coping. Make sure your teen knows that you're still the parent and that you love him or her. Also make sure as best you can that you understand each other's needs.

How can parents help children cope with a parent's diagnosis?

Stick to routines when possible. Get a friend to take your kids to sports practices or ask someone to bring dinner if needed. It's important to let kids be kids and to maintain normal parent/child roles and responsibilities as much as possible.

Also, if your child likes to express themselves through writing, encourage them to keep a journal. This can help them work through problems and express their feelings privately. And, although it might be tempting, it's essential that you don't look through the journal. Let them have a safe, private place to process things.

If a journal isn't a good fit for your child, there are many other ways to help them cope with their emotions.

What do teens want most when a parent is sick?

Teens just want to be normal, but at the same time they want to help their parent and want their parent to get well.

It's important to help teens balance their social life and family life. Teens usually struggle with guilt - they feel guilty about not being with the sick parent when they're with their friends, and they feel guilty about not being with friends when they're with their sick parent.

Can you recommend resources to help kids and teens cope with a parent's cancer diagnosis?

Here at MD Anderson we offer a support group for kids called CLIMB; we also have a Teen CLIMB group. They group is free for families. To learn more about the group or about talking to children about cancer, speak with your social work counselor or call 713-792-6195.

Also, the National Cancer Institute's When Your Parent Has Cancer is a great guide for teens whose parents have cancer.