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Why children with brain tumours need to be heard

Chartered Clinical Psychologist, Dr Roberta Bowie, explains why one of the most important things you can do for your child is simply to listen to them.

Nothing can describe the fear and desperation a parent feels when their son or daughter is diagnosed with a brain tumour. You would literally do and give anything to help them. But often you’re left wondering how you can help, when you may feel very vulnerable yourself.

Talking improves understanding

A brain tumour diagnosis can be incredibly complicated for an adult to process, let alone a child, but talking can make a big, big difference.

Giving your child lots of opportunities to talk about what’s happening is incredibly useful in enabling them to better understand and cope with their diagnosis. Sometimes children can draw conclusions that can be way off, but encouraging them to talk can help them to process what’s going on at a level they understand.

For example, a five-year-old might not be able to grasp timeframes very well so telling them that they are having chemotherapy for a year may leave them feeling confused and thinking ‘this is my life forever now’.

But clarifying things in terms they understand, such as ‘hopefully your treatment will be finished by next Christmas’ or ‘we hope that when you start your new classroom at school that your treatment will be finished,’ can help them make sense of the diagnosis in context to their own reality.

Talking equips children to cope

Having open, honest and clear conversations can be very difficult, but they can better prepare children for the next step ahead.

Parents can often be wary of using words like ‘cancer’ or ‘tumour’, but children of reading age might see leaflets with these words on at the hospital, overhear them in the hospital or even see them on Google and feel scared or confused.

It’s important that any information they hear is coming from someone that they trust, who loves and cares about them, and not, for example, from a child in the playground, who blurts something out.

Equipping your child with age-appropriate facts and giving them a chance to rehearse what to say, puts them in a far less vulnerable position and leaves them feeling more empowered and confident to cope.

Talking helps children to feel heard and validated

When we’re feeling frightened it can be easy to project our own feelings onto our child but it’s important to let our children speak about their feelings before we do. Children need to feel heard. They need to know that their feelings matter and that what they’re saying is important. Not only does this make them feel deeply cared for, but it protects their mental health and wellbeing.

What upsets a child can be surprising. The abstract meaning of ‘cancer’ might not have sunk in and instead their worries might be based more around missing their pet dog, being unable to attend a friend’s birthday, or thinking ‘what if my friends all forget about me?’

Giving children the space to talk about what’s really upsetting them instead of just presuming, enables them to feel understood and validated. Instead of disregarding their worries in light of the bigger picture, acknowledge them and see if there’s a way you can work through them together.

For example you might say: ‘I’d be upset too if I was missing a friend’s birthday. Maybe we could ask your friends to record a phone message for you?’ Recognising their worries, gives you the opportunity to show them that they can be mitigated.”

Talking reassures children that it’s OK to express their emotions

When you’re feeling very emotional yourself, talking to your child about their illness can seem incredibly daunting.

Understandably, parents often say to me ‘I’m scared to talk to my child about their illness, because I’m going to get upset and I don’t want them to be worried about me or scared.’ But I always say it’s not necessarily negative for them to see you upset.

In fact it can be helpful for them to learn how to model their own coping behaviour. It’s an opportunity for you to reassure them that it’s OK for everyone, including them, to cry about the situation and to open up about how they’re really feeling.

Children need to feel that they have permission to talk about what they want to talk about. If parents feel ambivalent or scared about talking about the tumour, they might not be creating opportunities for the child to speak.

It’s really useful to let the child know it’s OK to ask whatever they want to, and that you will do the best to answer and if you do not know the answer you will try to find out. Psychologists often use a three-step process: Tell me what you think is happening. What do you think might happen next? What are you worried might happen?

Talking can provide feelings of security and comfort

With multiple appointments, hospital visits and potentially different treatments, it’s natural that a child might feel quite unsettled following a brain tumour diagnosis.

But talking with them about changes in routine and the anticipated treatment plan may help provide a sense of security, so that your child knows what they might expect over the months ahead.

Conversations like these also provide a good opportunity for them to talk any worries through with you, which can be comforting as well as productive. For example, if your child is worried about having a cannula fitted, you could perhaps speak to the medical team beforehand about using a numbing cream, which your child might find reassuring.

However, the aim is not to try to always solve your child’s worries or get rid of unpleasant feelings, as this won’t always be possible. It’s more about listening to your child’s feelings, letting them know it’s OK to feel those feelings and to work out the best ways of managing them.

Talking can reduce feelings of isolation

Being diagnosed with a brain tumour can feel quite lonely or isolating. But talking to others and sharing those experiences can help let others understand what we’re going through, which creates empathy and can make us feel less alone.

Even if people aren’t going through the same experience, by confiding in them or talking to them, we can feel like we are sharing that experience with them, which can help strengthen bonds.

It might be that your child feels worried about upsetting you and so may feel more comfortable talking to a relative or even a friend their own age.

Obviously there are a spectrum of experiences, but if your child has a supportive group of friends, they might find that talking to peers at school provides them with a fantastic source of support, lift and comfort.

Need some support?

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.

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About the author

Dr Roberta Bowie is a chartered clinical psychologist, passionate about how clinical psychology input can support those with physical health diagnoses and their families, particularly paediatric oncology. She has a special interest in the neurocognitive impact of having a brain tumour and has been working as part of a team to develop assessments for children and young people diagnosed with a brain tumour so that this group are appropriately supported in school and college, and in their social pursuits.

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