Six ways to give children a voice in their medical care

Parents often have questions about how to discuss their child’s medical care with their child. Giving children a say in their medical care can help them feel supported and less anxious. They may also feel more prepared for what is to come. The number one question from parents is “how” can I do that?

We spoke with Le Bonheur’s Palliative Care team, Dr. Melody Cunningham, Dr. Amanda Linz, Joanna Lyman, MA, CCLS and Stephanie Barta, CCLS for advice. They provided six ways you can start today to give your child a voice.

1. Start with your body language

When a doctor comes into the room to speak to you, make sure that you are sitting close to your child. Turn your body outwards so that your child is not closed off from the conversation. This will help your child feel included.

2. Find your own voice

As a parent, you are the best advocate for your child. It is vital to learn how to be an advocate. Know their non-verbal cues and other signs they are uncomfortable. Learn how your child likes to take medicine (i.e. with milk or with juice) and participate in procedures. For example, do they like to watch or look away? Communicate these preferences to your pediatrician. Know your options when it comes to their medical care. If you ever have any questions don’t hesitate to ask.

3. A choice should only be offered when there is a real choice

A child doesn’t have a choice if they take their medicine or not. They also don’t have a choice if the doctor is going to listen to their heart or not. Only give your child legitimate choices, such as, “Do you want to take your medicine now or in 5 minutes?” or “Do you want the doctor to listen to your heart first or your lungs first?” These questions provide a real and developmentally appropriate choice for your child. This will help include them in their medical care.

4. Give your child words for their emotions

Having words to describe how they are feeling will help them cope better in the hospital. Try introducing storybooks that identify emotions for your child so that they might learn the names of their feelings. Don’t be afraid to show your emotions in front of your child. This will give them a real life example of how to cope with their own feelings. For example, “Mommy is sad right now because…”

5. Fear of the unknown is often worse than knowing the truth

Many times, parents want to protect their child from things that might be upsetting. That means maybe not telling them where they are going or why. For many children, the fear of the unknown is more frightening than knowing they are going to see the doctor. Giving your child more information may help ease their fears. For example, “The doctor is going to give you a medicine called an immunization that will help to keep you healthy.”

If your child is showing interest in what you and their doctor are discussing, then include them in the conversation by asking them what they want to know. When your child does ask a question, always acknowledge it, validate their feelings, and seek for clarification and understanding. Kids don’t always understand everything that is being said, so when they ask questions, double check the meaning with them. A good follow up question might be, “That’s a great question. What made you ask that?”

6. Talk through scenarios with your child

Before going to the hospital, clinic or pediatrician’s office, talk through different scenarios with your child and ask for their opinions and preferences. Ask your doctor if preplanned activities are available that may help prepare your child for their visit such as a pre-surgery tour.