Talking to children about brain tumours
We know that talking to children or young people about a brain tumour diagnosis can feel extremely difficult and scary. Knowing what to say and how to say it isn’t easy, so we’ve put together some information to help guide and support these tricky conversations.
It’s important to remember that there are a number of factors that will impact a child’s understanding and reaction to someone’s illness, including age, personality and family circumstances.
Age will play a key role in the kind of language you should use and the potential response you’ll receive.
In this resource we will cover:
Talking to children of different age groups
Children younger than three
Children this young may not understand what a brain tumour is. However, even young children will recognise that something isn’t right – they may notice changes in routine or the absence of a loved one.
A child under five might show their emotions through play, which means it’s really important to look out for any potential signs or changes. Examples may include appearing angry by throwing toys, becoming clingier, crying a lot and/or withdrawing from playing with other children and changes in sleeping or eating habits.
What can help?
- Make sure you or whoever is caring for your newborn/infant continues with familiar routines
- Watch for clues in their play about how they are coping.
- Lean on friends and family members for support, both practically and emotionally.
Children aged between three and six
At this age, children may have a very simple understanding of what being ill means, including the possible implications. At this age, children tend to be in the ‘here and now’, so many questions may relate to their immediate situation, for example, ‘what will happen to me?’ They may also think they’ve caused the illness and may ask questions like, ‘Is it my fault you’re poorly? Did I cause it?’ They may experience a range of emotions, which could come out in the way they behave.
Children at this age might become aggressive, have trouble sleeping, become fearful of being alone and may appear to regress with some of their behaviours, for example by thumb sucking or baby talk. They may also have lots of questions for you.
What can help?
- Use simple language, with lots of opportunities for repetition.
- Use picture books and toys to help explain what’s going on.
- Make sure they know they haven’t caused the brain tumour and that it isn’t contagious.
- Make sure they know it’s okay to feel lots of different feelings, label these feelings and talk about what they can do when they feel a particular way.
- Talk about what might happen next (if you know).
Children between six and twelve
By this age, children can usually understand illness and the potential implications. They may have some basic understanding of this through school and life experiences. They may not know what a brain tumour is, but by using simple language are likely to be able to understand.
At this age, we expect children will experience a range of feelings, which may come out in the way they behave, for example sadness, anxiety, sensitivity, withdrawal, anger, guilt and envy.
Some of these behaviours are likely to be seen at school, such as lack of concentration/attention, withdrawal from friends or physical pain.
What can help?
- Always keep them in the loop with what’s going on.
- Use books to explain.
- Consider art, sport or music as ways to express feelings.
- Recognise changes in behaviour as possible reactions to the news.
- Reassure them.
- Give them tasks around the house, which will help them to feel useful and needed.
We know that being a teenager can be challenging at the best of times, let alone when coping with the additional stress and anxiety of a poorly parent or relative. They are likely to have a good understanding of illness, implications and symptoms.
Often teens are wanting to feel and be increasingly independent, therefore you might find they struggle to express their feelings and reach out for support.
This may seem like they don’t care at all, but could just be their way of coping. Teens may be come distant, withdrawn and experience feelings of loneliness. They may become angry, moody, anxious or scared and their reactions may feel more intense for them than for adults.
Equally, as a teenager may understand more, they might want to talk in more depth about the brain tumour and have lots of questions for you.
What can help?
- Observe any differences in the way they’re behaving.
- Think about ways they can talk about their feelings, e.g. using notes on a phone or a journal.
- Encourage them to lean on friends and family.
- Talk openly and honestly – don’t keep any secrets.
How to talk about the diagnosis
It may be worth thinking about what you’re going to say in advance. Having a plan gives you the chance to practise with family members and friends, or perhaps a health professional you trust. Be aware that even with lots of planning, you’re unlikely to know the answers to all the questions you’re asked – it’s okay to say you don’t know or you need to go away and find out.
You may put pressure on yourself to have “the perfect conversation”, however the conversation may not go perfectly and that is okay. You can have multiple, smaller conversations if you need to. If your child asks you a question and you’re not sure of the answer, it is okay to say “I’m not sure but I will do my best to find out for you.”
As a starting point, it’s worth thinking about when and where you’re going to tell the children/young person and who’s going to do it.
It may help to write down your thoughts and what you would like to say. This can help to put your thoughts somewhere other than your own mind; as ideas and worries can go around in our head and writing it down can help to order your thoughts.
Whether you choose to do a sit down conversation, make it apart of play, casual or formal there is no wrong or right way. You know your children better than anyone and will say what is right for your family.
When to tell the children?
It’s best to start thinking about telling the child or young person once you have a diagnosis. Even if you don’t tell them what’s happening, they’ll usually recognise that something isn’t right. This might be due to changes in routine, body language and conversations they may unintentionally hear. It can be difficult if you don’t know the ins and outs of the brain tumour diagnosis and what this might mean for you and your family, but remember it’s okay to say you don’t know.
Who should tell the children?
This is completely down to personal choice and circumstances. It may be best to have another family member present (partner, parent, grandparent, sister) for support, but equally if you’d rather do it alone, that’s okay too.
If you feel it’s appropriate, you could always ask a professional to be there so they can help answer any tricky questions.
If you don’t feel this is appropriate, but you’d like some support from your medical team, do get in touch with them before the conversation and ask.
Where should I tell the children?
Choose a safe and familiar environment. The child/young person needs to feel comfortable enough to ask questions and react honestly. This is likely to be somewhere in their own home.
What kind of language should I use?
Keep it simple
The kind of language you use will depend on the child/young person’s age, however it’s recommended that you keep your language simple and easy to understand. If you’re too subtle or vague, they won’t understand what you’re saying and may not believe you. They may also feel angry if they feel they’re being excluded.
Be open and honest
We know that children can have vivid imaginations, so talking honestly to a child about a brain tumour diagnosis to prevent opportunities where they may use their imagination inaccurately to understand what’s happening/going to happen is really important.
Communicating openly and honestly with a child about a brain tumour means they’re more likely to share any fears, worries or questions. It also gives time to put anything additional in place to make sure the child feels secure and supported, e.g. school counsellors.
Although it’s important to be honest about the situation, we appreciate that you may not want to share every single detail, so use your judgement about what to share based on your child’s age.
Make sure you don’t rush through what you’re saying, so the child/young person has the time to process the information and ask questions. Listen to your child and be prepared to repeat things more than once.
Show how you feel
Talking about a loved one’s brain tumour diagnosis with children and young people is likely to be extremely emotional. Remember it’s okay to cry and be sad in front of your child. Expressing these emotions will show them that feeling sad is totally natural and normal.
Labelling how you’re feeling will hopefully encourage the child to open up and express how they’re feeling themselves. Reassure them that it’s okay to have lots of different feelings.
It might be nice to spend some time thinking about what you can do together to make yourselves feel better when feeling sad, for example watching a favourite film, having a hug, going for a walk.
Listen carefully and ensure you give plenty of opportunities for your child to ask questions and be prepared to answer the same question more than once. It may be helpful for the child/young person to have a place to write down any questions, e.g. a journal or notes section on their phone.
Don’t be afraid to say you don’t know if you’re unsure about the answer to a question. It’s much better to be honest than to make up an answer.
What is a brain tumour?
Younger children – a brain tumour is a lump in the brain that isn’t supposed to be there. The tumour can stop the brain from working the way it’s supposed to. The doctors will help to get rid of the brain tumour.
Older children – a brain tumour is a group of abnormal cells, which grow inside the brain. As the collection of cells continue to grow, the tumour gets bigger and can start to squash various areas of the brain, stopping them from working properly.
If this doesn’t feel right, it is important to use the terminology you are most comfortable with. Here are some ideas:
Something in “mummy’s” head
Giving the tumour a “Name”
Could I catch it?
No. Brain tumours are not contagious. They’re very different to a cold or a stomach bug and you can’t catch it from somebody else.
Was it my fault?
No, brain tumours are nobody’s fault. Unfortunately, very often the answer is that we just don’t know why people get brain tumours.
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