Talking to your child about a difficult diagnosis

When your child receives a difficult or life-changing diagnosis, you may face a variety of new challenges. Your everyday life, as well as your family’s normal routine, may be transformed to include more frequent doctor’s visits, new medications or other lifestyle changes such as diet or activity restrictions. These changes can be very stressful for the entire family. Sometimes, explaining the diagnosis to your children may be just as difficult as managing their medical care. Le Bonheur Child Life Specialists Brittney Gunter and Jessica Kellough offer some practical tips on how to talk with your child about his or her diagnosis.

  • Be honest. Your children will benefit most when you are honest with them. Explaining the diagnosis will give you the opportunity to discuss how it will change their normal routine and explore their feelings about these changes. What’s most important: letting your children know that you are there for them no matter what happens.
  • Keep it age appropriate. Simplify complicated medical terms to suit each child’s level of understanding. Kid’s Heath is a great resource for defining medical terms in child-friendly language (www.kidshealth.org). Also, let your children set the pace of the conversation. Young children are naturally inquisitive and may ask many questions, then tire of talking about the diagnosis and suddenly start playing with a toy or change the subject. Older children and teens may need some time to think about what you have discussed before they ask for more information. What’s most important: Letting your children know that they can talk to you when they are ready.
  • Use your resources. Your children will naturally look to you for information, so know what resources are available to you. You are not expected to be an expert! Write down any questions you and your children may have for your next doctor’s visit. This is a great way to involve children in medical care, as well as making sure everyone’s questions are answered. What’s most important: You don’t have to know all the answers, just how to ask questions until you find the answers you need.
  • Sharing the news with others. Make sure that all the right people know what is going on with your child. For example, if your child is diabetic and goes to school, it is essential that the school is aware of your child’s diagnosis, medications, and what to do/who to contact in an emergency. In instances where it is not essential for others to know about your child’s medical needs, let your child determine who and when they tell. This is especially important for older children or teens who may need extra time to accept their diagnosis before they are ready to share with their peers or extended family members. What’s most important: Let the right people know the right amount of information and take your time with the rest.

Sharing information with your children about a diagnosis or medical care can be scary, but it is a vital part of promoting positive coping and understanding in regards to medical care. Children are very aware of their surroundings and are typically able to sense when information is not being given to them. It is common for children to have misconceptions related to what they believe is happening because of a lack of information. Providing appropriate information about a difficult diagnosis fosters trust between you and your children. There are fewer opportunities for misconceptions, as your children know they are able to talk with you about any questions or concerns.

At Le Bonheur, we have child life specialists who are trained in explaining medical information in developmentally appropriate, child-friendly terms. Feel free to contact the child life department at 901-287-6021 with any questions about how to talk with your children.

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