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Talking to children about your illness

If you’ve been diagnosed with a terminal illness, you may need to speak to children about it. They could be your own children, grandchildren, great-grandchildren, nieces, nephews, or other children in your life. If you’re uncertain about how to tell them about your illness, you might find the information below helpful.

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Paola's story - Talking to my children

Whatever your situation, you may need some support. The information on this page is designed to help. There are also a number of resources at the end of this section that you may find useful.

Who should tell children?

If you have a partner, it’s usually best to do this together. But this may depend on how you normally talk as a family. Some people find this too difficult and ask their partner to talk for them. If this is the case, you may want to be in the same room, depending on how you feel.

If you’re a single parent, you may want to break your news alone, if you feel up to it. Otherwise you could ask a family member or close friend to be with you.

Another option is to ask a professional involved in your care to be there, so they can help to answer your children’s questions. You may also find it helpful to speak to a professional for advice on what to say beforehand.

If the child you’re speaking to is not your own child, you may find it best to talk about your illness with their parents present, or ask them to break the news. The child may then feel more able to ask questions and talk about their feelings with their parents.

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When should I tell children?

It’s usually best to let children know what is happening as soon your diagnosis is definite.

It’s also important not to underestimate how much children pick up, even very young ones.They’re often sensitive to tensions and unease in the family.

Sometimes adults think that children will be unaffected if nothing is said. In fact, this can have a negative effect on a child because they may begin to blame themselves. It’s usually much better to be honest.

Not talking about your illness may also make a child feel very lonely and afraid. Generally, children feel better if they are included and valued, so do try to talk about your illness as soon as you feel able.  

This will also give children time to prepare for the future, minimising unnecessary anxiety and distress.

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Where should I tell children?

Choose a place where children are likely to listen to what you’re saying, feel comfortable asking questions and feel able to show their emotions, like their bedroom or somewhere else in the home. You may also want to find a place where you’re unlikely to be interrupted.

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How should I start?

You may want to sit at the same level as them, for example if they’re sitting on the floor. This will help you feel closer to them and get their attention.

There is no right or wrong way to begin such a difficult conversation. But you could start by talking about what the doctors have told you. For example, ‘The doctors have said that I’m ill and they will make sure I’m not in pain, but they can’t make me better.’

It may also be helpful to view your first chat as the beginning of an ongoing process. You don’t have to go into too much detail and it’s best not to give children too much information. You can gradually build up, giving them small chunks of information over time.

As your chat progresses, allow it to be directed by the child’s reactions and questions. Also try to ask questions that encourage them to express what they’re thinking and feeling. For example, you could begin questions with: ‘What do you feel about…?’. 

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What should I tell them?

Children want adults to be honest, so give them an accurate picture of what is happening. If you’re vague or hide things, they’ll find it hard to believe you either now or later. Children who aren’t told enough may also feel angry that they are being excluded.

Also remember there may not be any ‘right words’ to express what is happening and how you’re feeling. It’s also fine to let children know that you don’t know the answer to a question. Tell them you’ll try to find the answer and let them know as soon as you can.

What you tell a child will also depend on their age and understanding of serious illnesses. A teenager may understand more and want to talk in-depth about your illness. They could also appear to not care at all. Try not to be offended by this – it’s just their way of coping.

Teenagers may also need more time to sort through their feelings. And they may want to discuss what your diagnosis means for family life, especially if you’re their parent and the family’s financial situation is likely to change.

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Telling a child’s teacher

If you’re ill and you tell your child about your illness, you may want to talk to their teacher or head teacher. You could ask them to let you know how your child is coping. Teachers can be very supportive if you keep them updated.

If you tell a child other than your own about your illness, for example, a grandchild, you may want to suggest to their parents that they do the same.

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Visiting you if you become very ill

If your condition deteriorates and you have to stay in a hospice or hospital, you may want children to visit you. This will give them an opportunity to tell you how they feel. It’s usually helpful to include children at this stage, although they may not wish to stay very long. They may also feel awkward or bored. Depending on the child’s age, you could ask whoever is bringing them to pack a game or toy to keep them occupied.

If you don’t want children to visit you, or children don’t want to visit, you may want to ask them to make a picture or card, tape a message, or write a letter or poem for you.

Because some illnesses and treatments affect the way a person looks, you may be worried about how a child will react to any change in your appearance. If this is the case, it’s a good idea to tell children in advance about what to expect and reassure them that you’re still the same person.

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Telling children you’re going to die

It’s obviously very hard to tell someone you love that you’re going to die. You may try to find reasons not to tell a child, or delay telling them. There are some activities that you can do together that may help your child understand what is happening, for example creating a memory box  .

It helps to prepare children so that when you die it doesn’t come as a complete shock. Children will usually pick up the anxiety and distress of adults around them, even those trying hard to hide their feelings.

As with adults, telling children someone is going to die will give them the opportunity to spend quality time with a loved one, if they wish to. They can only do this if they know what’s going on.

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Books for adults

The grieving child: A parent’s guide (2003), Helen Fitzgerald, Simon & Schuster (ISBN 0671767623; RRP £8.95).

Help for the hard times: Getting through loss (1995), Earl Hipp, Hazelden Information & Educational Services
(ISBN 1568380852; RRP £11.50).

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Books for younger children

When someone has a very serious illness (1991), Marge Eaton Heegard, Woodland Press
(ISBN: 0962050245; RRP £5.54).

The huge bag of worries (2004), Virginia Ironside, Hodder Children’s Books
(ISBN: 0340903171; RRP £5.99).

When dinosaurs die: a guide to understanding death (2004), Laurene Krasny Brown and Marc Brown, Little, Brown and Company (ISBN: 0316119555; RRP £5.99).

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Books for older children

The soul bird (2004), Michal Snunit, Constable and Robinson, (ISBN 1841198978; RRP £7.99).

The grieving teen: A guide for teenagers and their friends (2000), Helen Fitzgerald, Simon & Schuster
(ISBN 0684868040; RRP £8.84).

Straight talk about death for teenagers: How to cope with losing someone you love (1993), Earl A Grollman, Beacon Press, (ISBN 0807025011; RRP £15.99).

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External websites

Child Bereavement UK   – helping children and young people deal with death

Cruse Bereavement Care   (England, Wales and Northern Ireland) – bereavement services including support for children and young people.

Cruse Bereavement Care Scotland  

Macmillan Cancer Support   – creating a memory box

Winston’s Wish    ̶  support and guidance to bereaved children

Riprap    ̶  support to teenagers whose parents have cancer

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