Talking to someone who has children living with them

Please be aware - this information is for healthcare professionals

When someone has a terminal illness, they may have some concerns about how it’s affecting their family, particularly children. They may have worries about practical issues, such as childcare, and may also be thinking about how the circumstances are affecting their children emotionally. Talking to a child or children about the death of someone they love can be very difficult.

The following information should help you prepare when supporting people living with a terminal illness who have children in the family.

How much do children understand?

Children can be very perceptive and are often aware when something’s wrong. They need adults to help them make sense of what they are seeing, hearing and feeling. Each child is different and how much they understand will depend on their stage of development. Generally, you can expect the following levels of understanding:

  • Babies and toddlers may not understand what is happening, but they can pick up on the changes. It may help to suggest to their family that they try to maintain their child’s routine as much as possible under the circumstances. Physical affection is also important and can give reassurance.
  • Young children may not understand that death is permanent and may expect the person to reappear. The only other loss they may have experienced could be something replaceable.  
  • Older children start to realise that people don’t come back after they’ve died. They might not understand the cause, and they might fear they are to blame or that others will die soon too.
  • Although teenagers may be able to understand the situation, it is likely that they are not emotionally equipped to manage on their own.

 Children may give you clues that they’re upset, even if they don’t say anything. From speaking to their family, you may find that they:

  • have regressed and are acting younger than their age
  • are getting angry or irritable
  • are having problems at school
  • are having trouble sleeping
  • are complaining of physical symptoms like headaches or tummy aches
  • are spending more time in their room alone or have become reclusive   

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How can I support the parent or guardian to tell children about terminal illness?

The patient might be anxious about telling a child that they have a terminal illness, which is completely understandable. They might not feel able to break the news, or they could be struggling to find the right words.

You can ask whether they would like a member of the team, such as their GP, nurse or social worker, to be there for support when they tell the child. Some people might want a faith leader or a chaplain to help.

If your patient is receiving care from a specialist palliative care team, there will usually be a social worker available who can support children at this time to help them understand what is happening.

We have information for patients about talking to children about terminal illness that may be helpful.

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How do I answer difficult questions children may ask about death and dying?

It’s important to let children express their feelings and ask questions. You can’t make their grief go away, but you can help them cope with it.

It would be helpful to find out from the child’s parent or guardian what they know about the current circumstances. This can help limit the risk of saying the wrong thing at the wrong time. You could find out what the child has already said to them and how much they think their child is ready to hear. It’s also very important that you understand and are sensitive to any religious or spiritual beliefs the family has.

It can be difficult to take in lots of information about a terminal illness, regardless of age. A child might be thinking about lots of questions that they don’t actually ask, and they could be imagining circumstances or scenarios that aren’t real. A specialist social worker has access to resources such as exercise books, which can help the child understand what is happening and work towards coping with bereavement. You must always have consent from a parent before making a referral for a child.

Try not to overload the child with too much information, which they may not understand or be emotionally ready to hear. Use simple language that is appropriate to the child’s age. For younger children, it might be helpful to use familiar examples from nature, like a flower dying and not coming back. Try to use clear language when talking about death and dying. It may seem kinder to use phrases like going to sleep, passing away or going to heaven, but this may make the child feel more confused.

Remember that you cannot promise a child that you will keep a secret and it is important that you let them know this.

Drawing pictures, writing stories and poems, or keeping a journal are all useful ways of helping children to express their feelings. They might want to make a scrapbook, a video, a photo collection or a memory box with treasured objects.

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How do I deal with my own feelings?

You may find looking after a family with young children who are facing the death of a loved one an emotional experience. It may remind you of bereavements or other difficult memories of your own.

Talk to your colleagues about the emotional impact of your work, and to seek their advice and support when you need it. You may find that clinical supervision or reflection helps you to make sense of these feelings. If clinical supervision is not available to you, you could consider speaking to your GP.

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What do I do if I am concerned about a child?

If you are worried about the physical or emotional wellbeing of a child and the potential long-lasting effects of trauma, it is important to share this information according to your local safeguarding procedures.

Should I ask about parents or guardians about practicalities, such as childcare?

It may be a good idea to have an informal discussion about any practical issues with the patient, to give them a chance to mention any difficulties and talk about what support they would like. Some people may find it difficult to admit that they are not coping or need help, so this conversation should be approached carefully.

Be aware that the patient may be happy to have the child nearby as they approach the end of life. However, they may also be worried that the situation is too upsetting or find that they don’t have enough time to get the rest they need. It may be helpful to discuss this with your patient and discuss options for making things easier.

During these conversations, if the patient raises any issues you don’t feel equipped to deal with, you should speak to their GP.  

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