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Talking to children and young people about terminal illness

If you, or someone close to you and your tamariki / children or taitamaiti / child, have mate pukupuku / cancer or other serious illness, that has come back, spread or is terminal, you might be wondering how to talk to your tamariki / taitamaiti about it. Start here.

It’s a sad reality for a lot of Kiwi families. That’s why we’ve put together a free guide about talking to tamariki / children and mātātahi / young people about terminal illness.

Read on for a brief overview about talking to tamariki / children about terminal illness, including what they need to know.

When talking to tamariki / children about terminal illness…

  • Remember that tamariki / children as well as adults can react very strongly to the news of terminal illness.
  • Let tamariki / children express their emotions and grieve in their own way.
  • Give tamariki / children an honest and age appropriate idea about your or a loved one’s prognosis.
  • Try to be open about death. Let your tamariki / children ask questions and express their fears.
  • Reassure your tamariki / children about the future.
  • Spend time with your tamariki / children so you can create lasting memories together (or let them spend time with the person who has the terminal illness).
  • Give tamariki / children realistic hope that you can still enjoy time together or that you (or the person with terminal illness) will still have some good days.

What do tamariki / children need to know?

If you’ve been told your illness is terminal, it’s important to keep talking with your tamariki / children. Like with your initial diagnosis, it’s likely that tamariki / children will sense that something’s happening. Not telling them can add to their anxiety and upset.

Tamariki / children will usually have similar feelings to adults after hearing about terminal illness, like:

  • Shock
  • Denial
  • Fear
  • Anxiety
  • Sadness
  • Anger
  • Guilt
  • Loneliness

Preparing tamariki / children or mātātahi / young people for the death of a loved one is difficult. Here’s an idea of what to cover in your first conversation.

Be honest and open

Once your tamariki / children know the illness is terminal, they need to be given an idea about what this may mean in terms of the outcome. Sometimes, the prognosis is clear, and people will know that they probably only have months to live. Other times, people with terminal illness are surviving for a longer time, even years.

If death is likely to happen soon, try to be as honest and truthful as you can, without scaring your tamariki / children. You might think that saying ‘death is always peaceful’ is helpful, but it’s not always true so it’s best avoided.

Let them know what to expect

Preparing your tamariki / children for the days ahead can help them cope. Explain how the illness might affect the person (e.g. they might be sleepy) and what treatment they may have (e.g. they need a lot of medicine). Young tamariki / children can think in concrete terms, so it helps to talk about death as a change in function.

Balance hope with reality

A terminal illness doesn’t mean giving up hope. Some people live for years with a terminal illness, including continuing active treatment and enjoying so many aspects of life, like spending time with their tamariki / children and whānau.

As time passes, the things that you’re hoping for might change but you can still be honest and realistic while offering hope. For example, you can tell your tamariki / children that the focus is now on living comfortably for as long as possible or being around to celebrate a special event.

Wait for tamariki / children to ask

When you’re planning to have conversations about terminal illness, it’s natural for your mind to run ahead and start thinking about everything your tamariki / children might ask you. But the reality is that they might not even think to ask you those things!

Instead, aim to give simple and short explanations and brief answers. Rather than answering a question they haven’t asked, wait for the next question and respond to that.

Offering lots of information and explanations can be overwhelming for tamariki / children, especially if they aren’t ready to hear them. It’s important to give tamariki / children time to absorb and process the information. If they ask a question you can’t answer, tell them you’ll find out and let them know – and make sure you do.

Use words they can understand

Sometimes phrases we use to describe death can be confusing for tamariki / children, especially terms like:

  • Passed away
  • Passed onto
  • Lost
  • Went to sleep
  • Gone away
  • Resting

Instead of these words, try to use straightforward language including the words ‘dying’ and ‘death’.