Talking to Children about a Diagnosis

When preparing to talk with a child about their diagnosis, parents should find a time when the child feels relaxed and comfortable. No one should be rushed, and the child should have time for as many questions as they need.

Every family is different, and the setting and timing of these conversations vary across families. Some families like to talk at bedtime, while driving in the car, or while snuggling in a cozy space. Some families prefer to have these conversations at a hospital, and to get help from a hospital staff person such as a spiritual care provider or psychologist. Families should choose the space and time that feel most comfortable.

• You know that you take medicine every morning. What do you know about why you take it?

• We've been going to a lot of doctor's appointments recently. What do you understand about what is going on?

• You get to work with helper teachers when you're at school. Do you know why?

• You know that you have a scar on your chest. Do you know how you got that scar?

When caregivers understand what the child already knows, they can use this existing knowledge as a bridge to the new information about the diagnosis. They can also correct any misconceptions or false beliefs that the child may share.

When explaining a diagnosis, adults should think carefully about how the child usually talks and communicates. They should use words and sentences that the child can easily understand, and clearly explain any new words. Staff from Child Life, social work, and palliative care often have great ideas for how to explain concepts in a way children can understand.

Many children understand better if they can see a picture, video, or physical model. Parents can ask their hospital team for ideas on child-friendly images that can help to explain complicated ideas.

When talking about a diagnosis, parents should aim to be honest and truthful. This means naming the diagnosis, and explaining the most important facts about symptoms and treatment. However, parents should not feel like they need to tell the child every single thing they know about the diagnosis. Instead, they can share the big ideas, and then see what questions the child has.

When children a question, parents should try their best to answer the question completely and truthfully. However, they do not need to give more information than the child asked for.

If a child asks a question and the parent does not know the answer, parents should be truthful in saying they do not know. Parents can say that they will ask the care team, and learn the answer together.

Sometimes children ask about something that is genuinely uncertain. In these cases parents can tell the child that no one knows the answer yet, but that the adults will keep the child informed as they learn more.

Children are not just tiny adults. They often view and understand experiences in a way that is different from their caregivers. In explaining a diagnosis, adults should express love and sincerity, but not strong emotions. By acting neutral, adults give space for children to receive information in their own way, and to experience authentic feelings.

Parents should try especially hard to avoid expressing fear when talking with children about a diagnosis. Children can easily pick up on a parent's fear, and then are likely to feel afraid and unsafe themselves.

Even among adults, individuals can respond very differently to the same diagnosis. Varying responses are even more uncommon among children.

Some diagnoses describe conditions that are neither "good" nor "bad." Some people welcome and celebrate these diagnoses, while other people grieve or feel angry. For example:

• One parent may be delighted to learn that their child is Deaf and be excited to introduce them to Deaf culture. Another parent may feel sad, and worry that their child will have trouble communicating.

• One teenager may feel empowered by an autism spectrum disorder diagnosis, and proudly celebrate their neurodiverse identity. Another teenager may feel embarrassed or angry, and wish they were not different from peers.

Other diagnoses are rarely welcomed, and are seen by most people as "bad." However, even for these diagnoses, individuals can vary greatly in their interpretations and emotional responses. For example:

• One child may be terrified to hear that a heart valve is malfunctioning and needs a repair. Another child may feel vindicated that their symptoms were real, and relieved that the problem is fixable.

• One teen may feel sadness and dread when they learn that they are going to be listed for a heart transplant. Another teen may feel relief after years of waiting, and hopeful that a transplant will make them stronger.

Family members should be aware that they are likely each to experience a diagnosis in a unique way, and to feel a wide range of emotions. They should expect the child to react with feelings and interpretations that may be very different from those of the parents.

• They love the child exactly the same before and after the diagnosis, and they will keep loving the child no matter what.

• The child will not need to be separated from the parents, and the parents and care team will stay alongside of the child throughout any illness or treatment.

• Everyone cares about the child, and the child will receive treatment because adults care about them.

• No one did anything wrong, and the illness and treatment are not the result of anything the child did, thought, or said.

Sometimes, children worry that they are different or even damaged after receiving a diagnosis. Adults can help by stressing that the diagnosis does not change who the child is, and that the diagnosis is just one tiny piece of the child's whole self. It can help to say things such as:

• "This diagnosis is just a word that describes what you've been experiencing. It doesn't change anything about you."

• "You are exactly the same person today that you were yesterday, before you got this diagnosis. You are just as amazing as you've always been, and I love you just as much."

• "This diagnosis is just one tiny piece of you. You are so many more things! For example, you're kind, and funny, and you are a great big sister, and a creative painter, and you love telling silly stories, and you hate blueberries. Those parts of you are bigger than this diagnosis."

Sometimes children avoid asking questions that might upset their parents. They may hold onto worries or fears without feeling like they can talk about them. Parents can help by responding to questions in a way that encourages further conversation.

When children ask questions, caregivers should do their best to respond neutrally and reassuringly. A child's questions sometimes make adults feel sad, scared, or angry. If adults try hard not to show big emotions in response to questions, they can help children feel safe and comfortable. Instead, adults can manage their own emotions with a therapist or another adult, and present a calming presence to their child.

If a parent is telling a child they have been diagnosed with ADHD, they could say something like:

"We've both noticed that you have been having more trouble getting your work done at school recently, and have been getting in trouble with the teacher. What is your understanding of what's been going on?...

"Do you remember when we met with the doctor a couple of weeks ago? You filled out a bunch of papers, and did some activities? The doctor called me today, and she said she thinks she knows why you've been having some trouble at school. You have ADHD, which stands for 'attention-deficit/ hyperactivity disorder.

"This means that you pay attention a little differently from most people, and also you are more active than most people. We don't know exactly why you have ADHD, but it's probably something about how the part of your brain right under your forehead works.

"Since you have ADHD, some things are really easy for you! For example, you can focus for a long time on something you really care about, and you have a lot of creative ideas that come to you really quickly. You're also great at noticing what is going on around you, and you are awesome at staying active and moving around.

"Since you have ADHD, other things are a little harder for you. For example, you have a harder time paying attention to something you are not very interested in, switching from one activity to another, and not getting distracted.

"So tell me: what do you think about all this? Does this make sense to you? Does it match what you notice about yourself? What are you feeling? What are you wondering? I love you, and I want to help you understand."

If a parent is telling a teenager that they have been diagnosed with Fontan-associated liver disease, the parent could say something like:

"I know you've been feeling sick and tired lately, and we've gone to the doctor for a few tests. Do you know what the doctors are testing for? What do you understand about how you've been feeling?...

"So, yes, you're right. The doctors were checking how several of your organs are working. Since you have a Fontan, your blood moves through your body differently from how it does for most people. Sometimes, blood moving through a body differently can cause problems in other organs. This has happened to your body.

"The doctors told me today that you have disease in your liver. You have something called 'cirrhosis,' which means that you have a bunch of scar tissue in the liver. This scar tissue is preventing your liver from doing its job of cleaning your blood and storing nutrients. This is why you've been feeling sick.

"I''m going to stop there since I what to know what you are thinking and feeling. What are you wondering? What is confusing you? What are you feeling?...

"Everyone cares about you, and your doctors are going to do everything they can to help you feel good again. They can't fix the scar tissue that is already on your liver, so you are going to need a new liver. This is called a liver transplant. You will have an operation where the doctors take out your old liver, and replace it with a new liver. We will stay in the hospital for awhile when you have your transplant.

"You are still the same person you were yesterday. Liver disease does not change who you are. We love you always, and we will be right next to you the whole time while you're waiting for the transplant, and while you're recovering.

"Anything you are thinking and feeling right now is totally normal. You might have a bunch of different feelings, and your feelings might change. All of that is just fine. I want you to know that you can ask me anything, and tell me anything you are thinking or feeling. You can also talk to some of the great people in your care team, who have helped lots of kids like you when they have a liver transplant."

These hospital staff are often especially skilled at guiding conversations about a diagnosis:

• social workers

• Child Life specialists

• psychologists

• palliative care providers

• spiritual care providers

Books and videos can often help children to understand their diagnosis, and to feel less alone. Below are some books and a video about having CHDs. Families can ask their care team for recommended resources related to other diagnoses.

• The Abilities in Me: Congenital Heart Defect, by Gemma Keir

• Blue Lewis and Sasha the Great, by Carol Donsky Newell

• Hank the Heart, by Ryan Moore

• Matty's Heart, by Jean Clabough

• Nathan's Special Heart, by Jessica Howard Ennis

• Super Heart Hero, by Samantha Kelly

• Zip-Line, by David Humphries

These links and titles listed on this pageare provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites and in these resources.

These books, websites, and videos can help parents with the task of explaining a diagnosis to a child. Parents can also ask their care teams for resources related to their specific diagnosis.

• How to Explain a Diagnosis to a Child, by Janet Arnold

• When Your Child Has a Chronic Illness: A Guide for the Parenting Journey, by Frank Sileo and Carol Potter

By opening the door to candid conversation, parents give their children a gift. They show children that adults are available and honest, and that they will respond empathetically to children's needs. This knowledge will help children to cope with any challenges to come.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is usually best when it is local. Families local to Boston can seek support in explaining a diagnosis from the Cardiac Neurodevelopmental Program, social work, Child Life, the PACT team, or spiritual care. Families in other regions can use the link below to find local care.