Even if your child requires care that is technical or complex, there is always a way to explain it simply, even to a young child or one who has neurological impairment. Of course, you need to understand the care yourself before you can explain it to your child.

Beyond questions about daily care, parents often wonder how to talk to their child about his/her chronic illness and what the future might hold. Children may ask challenging questions such as: “When will this problem go away? Am I going to die? Why can’t I run fast like the other children? How come I have to have so many blood tests?”
Sometimes children are very perceptive that their parents don’t want to talk about these topics (“taboo subjects”) and may wonder about these questions but not ask them.
Parents are often afraid to be honest with their children about diagnosis and prognosis. This situation can cause a lot of stress for the child and family. We do know that most families are actually relieved of stress when there is an open, age appropriate discussion of these “taboo” topics. We recommend that you speak to your healthcare team for more specific suggestions for these challenging questions. Finds tips below to get you started.

 

Explain and anticipate fears and false ideas.

Check your child’s understanding of the care and invite your child to ask questions.
Eg, “What do you know about what we need to do together today? Can you tell me more about how we will do this? Do you have any questions?”

Explain the care in simple steps that are easy to understand.

Use short words that your child already knows and explain new words using simple pictures or an example for simplicity.

Children have active imaginations! Avoid dramatic words or vague explanations. Recognize and correct misconceptions. See Examples of common fears below.

Describe anticipated sensations.
Eg, We will take your shirt off, so you might feel a little cold. There will be lots of light so that we can see well. You will feel a little tingle on your arm. There will be a strong smell, etc.

Provide an understandable context for time required for the care.
Compare the time required for the care (or a portion of it) with something that the child already knows, for example: as much time as it takes to brush your teeth, as long as the song lasts, until the video is finished, etc.

Be honest and keep your promises! Children are very perceptive of partial truths or “white lies” and have very good memories, when it comes to having a reward…

Talk about a positive activity that will happen after the care is provided.
Eg, “After the dialysis, you will be able to go to school. Your friend will come over to play. We will go to the park, etc.”

Use specialized educational materials made for children, if available (eg, books, multimedia, special toys or dolls). Ask your health care team about resources.

 

Examples of common fears in children:

• Fear of being separated from the parent/caregiver.
• Fear of the unknown, fear of strangers.
• Fear of dying: the child’s perception of death may be very unique.
• Worried about having pain or changes to their bodies: avoid using words like “break” or “bleeding”.
• Fears of catching something contagious (even if it isn’t!).
• Fears, phobias and false ideas about the care experience or having a chronic illness, including frequent worries about losing control. Often a misinterpretation of medical equipment or care practices: a young child might imagine that it is a punishment for some behaviour or that the needle might cause some lasting pain or damage to their body… or that the blood pressure cuff won’t stop squeezing, etc. Medical play is a wonderful way to explore potential phobias and false ideas about the care, in a safe setting for the child.
• Fears about being accepted by peers, especially with visible differences, like a tracheostomy or central line.
• Guilt: children may feel that their illness or required treatments are a punishment; older children may perceive that they have caused their parents to suffer or have stress.
• Fears of isolation and loneliness.
• Fear of loss of privacy or independence.