Talking to your child about their diagnosis

Talking to children and young people about their health condition can feel difficult, but open and honest conversations are important. By taking the time to talk to your child about their condition, you will help them to understand what’s happening, feel more secure and build trust with you (and their medical team/s.

Parents often tell us that they worry that by speaking with their child about the diagnosis, they might upset them. They also often share worries that they might start a conversation, and not know what to say. It’s important to remember that children are usually aware that something is happening and may form their own ideas or worries. Talking openly can:

  • Prevent misunderstandings and unnecessary anxiety

  • Help your child ask questions and express feelings

  • Build trust and confidence

  • Support them in understanding treatments and routines

  • Help them develop skills to manage their health as they grow

If you’re unsure how to talk to your child or need extra guidance book in to speak to a member of our team. They can offer advice and support tailored to your family.

  • Begin by asking your child what they already understand. This helps you to tailor your explanation to where they are at, it can also help with correcting any misunderstandings.

    Revisit this step as frequently as needed: children may need repeated conversations to fully understand, and their understanding will evolve as they develop.

  • Adapt how much detail you give depending on your child’s age and development:

    • Younger children benefit from simple explanations, play, stories or drawings

    • Primary-aged children may ask more detailed questions and want to be involved in appointments

    • Teenagers often want fuller information and may think about how their condition affects their life and identity

    Use clear, familiar language (including correct body terms where possible), and build on information gradually.

  • It’s important to give accurate information, even if you don’t have all the answers. It’s okay to say you’re unsure and suggest asking a healthcare professional together.

    Being honest helps maintain trust and reduces confusion. When children feel scared or uncertain, knowing they can trust what you say is especially important - avoiding untrue reassurances or “white lies” helps prevent confusion and builds a stronger sense of safety and trust over time.

  • Try to have conversations in a calm and quiet environment, free from distractions or interruptions.

    Planning what you want to say in advance can help. You might also use tools like drawings, books, or videos to support understanding.

  • Give your child space to ask questions and share how they feel. Reassure them that all feelings are valid. Listening without judgement is likely to help them feel supported.

  • Think about who should know about your child’s condition, such as family members, teachers or friends. Sharing information can help children feel supported and reduce stigma, but it’s important to respect your child’s preferences where possible.

  • These conversations can be emotionally challenging. Taking care of your own wellbeing - by seeking support, resting and sharing responsibilities - will enable you to support your child more effectively.