The Brainy Bag
Our free Brainy Bag contains toys and activities to help parents and carers create a relaxed environment with their child to address some difficult emotions they may be feeling about their diagnosis.Order yours
When your son or daughter is diagnosed with a brain tumour, you’re often left wondering how best to help them deal with it.
Understanding the basics of how to chat to them about what’s going on can make a big difference in how they come to terms with their situation.
Here, in collaboration with Chartered Clinical Psychologist, Dr Roberta Bowie, we share advice on how to talk to your child about their brain tumour...
Try to think about the specific words you use when you first start having conversations about their diagnosis.
Openness and honesty is the best policy when talking to children about what’s going on. Always try to talk in age-appropriate language too. For example, a four or five-year-old might not understand the word ‘cancer’, so instead you might talk to them about how all our body parts are made up of cells, but sometimes those cells grow too quickly and that can make us poorly.
Lots of children give their tumour a name which can feel less threatening; exploring what they feel about their tumour creatively can make the whole process feel less scary.
It’s not just the actual words that can make a difference. It can also be the manner in which you deliver them, tone of voice is also important. The conversation should always be gentle, slow and caring. Ask open questions and try not to start conversations assuming that you already know how your child is feeling.
It’s much better to say: ‘What are you thinking about?’ or ‘how are you feeling about going back to school?’ rather than, ‘I know you must be feeling upset.’
Often what is going through our children’s minds is hardly ever what we’re expecting; even if it is though, eliciting information from them is preferable to offering them what we think.
Pay particular attention to the setting and timing of the conversation.
Often conversations are more relaxed and less awkward while you’re both engaged in another activity, such as playing a board game, going on a car journey or doing the washing up. As your child is occupied, the conversation becomes a by-product of the activity and allows you to ask more open questions such as: ‘How are things with your friends?’ ‘How is school since you’ve been back?’ and can mean you’re less likely to just get a ‘yes’ or ‘no’ response back.
You might still find the conversation awkward and that’s OK – it’s perfectly normal. But if you can tell you’re irritating or annoying your child it might be better to say: ‘I understand that you don’t fancy talking right now. I respect that and maybe we can talk about it another time.’
Timing is key. It’s OK for your child not to be ready to talk and to open up. Just go at their pace and meet them where they are at.
Sometimes the hardest part of the conversation is getting the whole things going.
It can be hard to ask direct questions when you’re trying to be extremely mindful of how your child is feeling. One technique might be asking their permission. So you could say: ‘I wanted to talk to you about everything going on at the moment. Would that be OK?’
Or, if you don’t think your child will feel comfortable opening up to direct questions, you could always start by talking about life a bit more generally. For example why not try: ‘What’s important to you right now? What are you enjoying? Are you having much time to do the things you love?’
That way you are able to initiate the conversation by discussing the impact of the tumour first.
It can be difficult to know how often to talk to your child about what they’re going through but try making the chats a regular, ongoing thing.
Some parents think they need to have a one-off perfect conversation, but the way a child thinks and feels changes over time and in context with what they’re going through.
They might need more or less support and reassurance depending on where they are in their treatment for example, or how they’re feeling about school or their friends.
Regular catch ups are really beneficial for helping a child to recognise what their emotions are and how best to regulate them. It’s useful to remember that children live in the present, so tend to worry about what is happening now, rather than what might happen.
Some children will naturally be worried about telling their parents things that might upset them. This can be very difficult for their mum and dad, but Dr Bowie says it’s important that their parents know that that’s OK.
There’s no right way of coping for any of us. It may be that your child wants to talk to you, or it might be that they find it easier opening up to a professional or a close relative. Schools can often be a rich source of support too.
Whether your child is ready to talk or not, the most valuable thing you can do is to keep giving them the opportunity and to try to keep as many doors open as possible. For example, your child might not want to speak to a health professional at first but later change their mind and this could then become a really useful resource for them.
Either way, simply providing the opportunities to talk, even if those opportunities are not used, sends an important implicit message that talking is ok and is welcomed.
If your child does open up to you always say: ‘Thank you. I’m really glad you told me that’ or ‘that was really brave.’
But don’t worry if things don’t go to plan. You might try to have a conversation and it’s a complete disaster, and that’s OK. The important thing is that you just keep trying and that your child knows if they do want to talk that you are there for them and that you’re always ready to listen.
Our Children & Families team offers support to children, young people and families affected by a brain tumour diagnosis. We're here to help with any information you might need, answer your questions, listen and provide support.