Communicating During Your Child’s Illness

When your child has a serious illness, there can be a lot to talk about and information to share — at a time when communication may feel especially hard.

You might need to: 

• Understand new medical information   
• Learn about medicines and care instructions 
• Make decisions that impact your child and family 
• Stay in touch with friends, family, work, and school 
• Manage practical concerns, such as travel, housing, insurance, and care for siblings and other family members 
• Ask for help and let others know how they can support your family 

Why communication can feel harder right now

Managing your child’s illness can feel overwhelming and exhausting. Stress can make it harder to listen, remember information, find the right words, or know what to say or do next.  

Family members may also respond differently. One person may want to talk about or know everything. Someone else may need more time, prefer not to talk, or know just what is needed in the moment. 

A few simple strategies can help make communication easier for you and your family. There is not one correct way to communicate, so pick the tips that work best for you.  

Talking with your care team

Medical information can be hard to understand. You may hear a lot of new words. You do not have to understand or remember everything the first time. 

• Limit distractions so that you can focus.   
• Write questions down and bring them with you to appointments. 
• If you don’t understand, ask questions or ask the care team to say something in a different way. 
• Take notes and keep them in one place so you can find them when needed. 
• Bring someone with you to appointments who can help you remember later.  
• Let your care team know if your emotions are making it hard to absorb information. 
• Clarify important points and ask for time to think about the information. 
• Share concerns about symptoms, side effects, emotions, finances, transportation, school, or family needs. Your care team can often connect you with resources and support. 

You might say: 

• “Could you explain that in a different way?” 
• “What is the most important thing for us to understand right now?” 
• “Can you write that down for me?” 
• “I want to make sure I understood. What I heard was … Is that right?” 
• “I need a little time to think about this.” 
• “I’m feeling really overwhelmed right now. Could we talk about this again when I am thinking more clearly?” 

Remember, your care team wants you to be an active participant in your child’s care. They will work with you to help you understand information and make decisions.

Talking with your child

Children often have questions about what is happening, even when they do not ask them out loud. Keep open communication and follow your child’s lead about what information is important to them. 

• Try to be honest while using words your child can understand.  
• You do not need to explain everything at once. Give a little information, see how your child responds, and let their questions guide you. 
• Check to see that your child understood. Ask, “What other questions do you have?” 
• Be honest if you don’t know something or are not sure how to say it. It’s OK to say, “I don’t know, but we can ask.”  
• Make space for repeated questions. You might say, “You can always ask me about this, even if we’ve talked about it before.”   
• Listen and watch for feelings as well as questions.  

If you are not sure how to explain something, your child’s care team can help. Child life specialists, psychologists, social workers, chaplains, and others can help you find words that fit your child’s age and needs.

Talking as a family

No family is prepared for the challenges of a serious illness. Each family member has their own needs, feelings, and ways of communicating. Remembering that people react differently can help make conversations easier. 

• Choose the best time to communicate. You might ask, “I want to talk about this. Is now an OK time?” 
• Be aware of your emotions. It may even help to say how you feel before sharing your message.  
• Wait before responding, especially when you are feeling emotional. 
• Let the other person know if you expect a certain response or just want them to listen. State what you would like someone to do or the follow-up you need.  
• Make room for differences. Let each other know what type of information you prefer and how you like to communicate.  

No one is perfect. Conflicts and disagreements are normal. You might not agree with each other all the time. Respecting each other’s perspectives can help. If you need help making decisions, ask your care team for guidance.  

Talking with others

When a child has a serious illness, friends and family want to offer help and support. But sometimes knowing what you need and giving updates can seem overwhelming. It is OK to set limits on conversations when you need time and space. 

• Decide what information you want to share and what you prefer to keep private. 
• Consider choosing one trusted person to share updates with others. 
• Remember that you do not have to respond to every message right away. 
• Be specific about the help you need and tell others how they can best support you. 

You do not have to handle difficult conversations alone. No matter what the communication challenge, remember that support is available from many sources, including psychology, child life, social work, and spiritual care. 

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