How to Tell Kids About a Loved One’s Illness

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This is a special edition of The Child Repair Guide featuring a guest-post by Dr. Amanda Thompson. Dr. Thompson is a pediatric psychologist and Medical Director of Patient Support Services in the Center for Cancer and Blood Disorders at Children’s National Health System in Washington, DC. My interview with Dr. Thompson on How to Talk to Kids About Death, Grief, and Loss is a powerful episode and a listener-favorite. In her article below, she guides you through another challenging experience of parenting: telling your kids about a loved one’s serious illness.

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When someone in the family is diagnosed with a serious illness, life takes a sudden and difficult turn, and everyone can struggle to adjust.

Whether a grandparent has been diagnosed with Alzheimer’s disease, a parent is about to undergo treatment for cancer, or a sibling has just been diagnosed with type 1 diabetes, a family must cope with multiple new stressors. Difficult conversations are just one of the challenges that parents and caregivers face.

Talking to your children about the illness and helping them to understand the meaning of that news for your family may seem daunting at first, but can be made easier by considering these helpful hints:

1). Honesty is key.

Children, at almost every age, pick up on more than we often give them credit for— they notice hushed voices and tearful eyes, they overhear conversations.

If we’re not talking about what is going on (in a well-intentioned attempt to protect them), we run the risk of doing more harm than good, of causing more anxiety and fear, than if we were upfront with them in the first place. So even though it may be difficult, it’s important to share the news of the illness with your children, and to do so sooner rather than later.

2). Call the illness by its name.

Use the word: Alzheimer’s, cancer, diabetes, stroke, etc. Being specific serves a number of purposes. While young children are not going to understand what the word means right away (see #3), they ARE going to hear it and likely even see it. Adults around them are going to use the word, some kids are going to be able to read it on papers from the hospital or cards that get sent to the house from well-wishers, so it helps for them to get familiar with the word and know to what it refers.

Second, by using the word, it becomes matter-of-fact. It becomes something that doesn’t need to be feared. If, for example, we call cancer the “c-word” and don’t speak of it aloud, we give it power, make it taboo, and make it terribly scary. Remember, children live in a world where one the scariest of villains of their generation was “He Who Shall Not Be Named” — Voldemort. So, we must take our lead from Harry Potter, and name it. Name the scary thing and move on.

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3). Use terms your children can understand.

Provide developmentally appropriate explanations of the illness in terms your child can understand. Young children ages 6 and under, for example, are concrete thinkers and therefore must be given simple, concrete terms.

Thankfully, you don’t have to figure this out on your own. When you’re scrambling to understand a new cancer diagnosis or the nuances of insulin resistance, it can be really overwhelming to figure out how to dilute that information to be palatable for a 4 yr old or an 8 yr old. The good news is there are resources to help find the right words to describe the specific illness. Pediatric hospitals, for example, have Child Life Specialists, trained professionals who specialize in providing developmentally appropriate education about specific diseases to children of all ages; they use props and other visual aids to explain illness to siblings, cousins, even classmates. Even in the adult healthcare environment, there are resources—social workers and nurse educators all work with families—so don’t be afraid to ask.

Outside of the medical setting there are great books available, depending on the topic and the age of the child. The American Cancer Society has a number of books focused on when someone in the family has been diagnosed with cancer, and the American Psychology Association’s Magination Press has books covering stroke, Alzheimers, cancer, and diabetes.

4). Let them know that this is different than a cold

…or the flu…or a tummy ache. Remember that for most children, especially young children, their notion of illness is limited. It typically involves colds, the flu, tummy aches, and maybe a stomach bug; subsequent warnings from parents about germs, handwashing, and eating too much candy; and fixes that involve rest, cherry-flavored medicine, and perhaps a trip to the doctor’s office.

To help them avoid misconceptions about causes and cures and help them understand that treatment may be a longer process, it’s important to make an effort to distinguish your loved one’s illness from the common cold. You can do that by:

• Emphasizing that the illness is not contagious. While young children may not completely understand germs, they’ve heard of germs, and they know germs make you sick. They also know you can spread germs and you can “catch” colds. Because of this, it’s important to help them understand that their loved one’s illness is not contagious (assuming that is accurate), that they cannot catch it, and that they can continue to touch and hug and kiss their loved one as much as they are comfortable.
• Emphasizing that they did not cause it. Children between the ages of 2 and 7 (approximately) engage in what we call “magical thinking”, or a tendency to attribute outcomes or events to their own thoughts or actions. In other words, it’s very possible that they could think, ‘my mom got cancer because I got angry and told her I wished she would die’, or ‘my brother got sick because I kicked him in the stomach.’ For all kids, but this age group in particular, it’s critical that they know that nothing they did caused or could have caused their loved one’s illness.

5). Discuss the impact the illness will have on the child and on the family.

A child can have many worries when a loved one gets sick, but the one concern that is often most immediate is “what will this mean for me?” While that might seem like a selfish worry, that’s just the reality of how children think. So it’s important that you take time to describe how the illness will impact them, their world, and their day-to-day routine.

Doing so also helps you, as parents, think about and plan for a new schedule and routine, which helps to start to establish a new normal in the midst of quite a bit of upheaval. Will someone else be helping to take care of them? Picking them up from school? Staying overnight with them on weekends? Will relatives be visiting? Will mom look any different? Will she be able to come to soccer games and read the usual bedtime story? Will dad be staying some nights in the hospital? Will there be visits to grandma in the hospital? Will they still be able to play and roughhouse with their sick brother or sister?

Prepare your children for what to expect, as that preparation goes a tremendous way in supporting their overall coping.

6). Provide reassurance.

News of a loved one’s illness can understandably be scary or stressful for a child. Providing some gentle reassurance is important. Let them know that there are smart doctors helping to take care of their family member, that they will be cared for by a consistent adult, that you are there to answer their questions.

Be careful though, you have to strike a balance—too much reassurance can actually be problematic; going overboard, spending too much time providing this kind of comfort can actually reinforce anxiety (i.e., make anxious kids feel more anxious); so in this case, a little reassurance is plenty.

7). Offer opportunities to help or express sympathy.

Whether the sick loved one is a distant relative or an immediate family member, children should be offered the opportunity to help take care of or participate in some other act of kindness for the sick relative.

Sending a personal card or drawing, recording a video message, or speaking over video calls are all easy means of communication, even across distances. Children may enjoy making breakfast for an ill parent or helping around the house in some way (e.g., walking the dog, washing the dishes).

Do take care, however, not to overburden older children with too many caretaking responsibilities, as it can be easy for them to fall into parental roles when one parent in the household is ill. It remains important, critical even, that in stressful circumstances, kids still get to be kids.

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No one is quite prepared for the news of illness in a loved one. While a diagnosis can be a trying time for parents and children alike, following these recommendations can help to support overall family adjustment and contribute to positive coping.

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For additional resources on discussing serious illness with your children, check out:

• The Year My Mother Was Bald, by Ann Speltz
• Sammy’s Mommy Has Cancer, by Sherry Kohlenberg
• Upside Down and Backwards: A Sibling’s Journey Through Childhood Cancer, by Greves, Tenhulzen, and Wilkinson
• Always My Grandpa: A Story for Children About Alzheimer’s Disease, by Linda Scacco
• My Grandpa Had a Stroke, by Dori Hillestad Butler
• The Bald-Headed Princess: Cancer, Chemo, and Courage, by Maribeth R. Ditmars

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