Talking with my child

Talking with my child about their brain tumour

Your child’s health team will support you with information about your child’s diagnosis and with talking to your child about what is happening to them.  Your relationship with your child will help them feel reassured and loved – you are the key to helping them through this difficult conversation.  Remember that there will be support around you to help if you and/or your child is struggling.

Be Prepared

• Your child’s health team will support your initial conversations with your child, although your child may not take much in at this time.

• Be ready for lots of follow up conversations with your child. If it feels difficult, practice your conversation with a trusted friend or family member before speaking to your child.

• Be child led – go at their pace and level of understanding, and at a time/place that will work for them.

• Be open and honest from the beginning. This will help everyone adjust to the new reality more quickly without any misunderstandings. 

• Be prepared for a range of reactions depending on their age, personality and family circumstances.

Make time to talk

• Focus on the connection you have with your child – don’t feel you have to take over or direct the conversation. Follow their lead.

• Keep it simple and slow - children need to have a basic understanding of what is happening to them, using language appropriate to their age.

• Find a time to talk when you feel calm in a relaxed private setting - allow time for discussion and questions without feeling rushed.

• Allow time for them to take in what you have said – they may not know how they feel and may have questions later.

• There is no ‘right way’ and no ‘wrong feelings’. Acknowledge and accept any feelings they share. Children can be very honest and say things that might feel shocking – rephrase and repeat back what they say so they feel heard and accepted.

• Older children often feel more relaxed about talking when involved in an activity, such as washing the dishes together or driving in the car.

• Persevere with older children who might have little to say. Let them know you are there for them when they are ready to talk. E.g. “I understand that you don’t fancy talking right now. Maybe we can talk about it another time.”

• Open ended questions usually work best to encourage sharing (e.g. “Tell me about…) rather than questions requiring yes/no answers.

My child is a toddler (1 – 3 years), what do I say to them?

• 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.

• Accept and name the feelings that your child expresses, make sure they know its ok to feel lots of different things.

• Be available for questions.

• Be hopeful and positive (but not unrealistic).

• Talk about what might happen next (if you know).

 How much do I tell my child (4-12 years)?

• Provide simple explanations and implications based on their level of understanding.

• Allow for questions.

• Allow space for feelings.

• Know that their behaviours may reflect how they are processing feelings.

• Keep them in the loop.

• Be reassuring but not overly so which can increase anxiety.

• Books and shared stories can be helpful for explaining what’s going on.

• Consider creative or active ways to express feelings e.g. sport, art, music.

• Ensure they feel included and useful such as by having a household task they are responsible for.

Things to watch out for and to seek help for if concerns continue (4 – 12 years)

• Not concentrating/achieving at school

• Withdrawal/isolating from friends

• Low mood

• Loss of appetite

• Poor sleep

How do I approach this with my teenager (12+ years )?

• Keep them in the loop – be open and honest.

• Be available for questions and reassurance.

• Accept variable responses to the news including withdrawal, distancing or anxiety and increased clinginess. 

• Accept different ways teenagers may express themselves or communicate, e.g. online.

• Some teenagers will want more information to help process the information and emotions.

• Notice any big behaviour changes which don’t resolve.

• Encourage communication in their own time.

• Remind them of the supports they have around them.

Follow up

• Over time, children may change in how much they want to talk or what questions they want to ask. Follow their lead and be available for chats when they need them.

• Give your child opportunities to feel a sense of control over this situation. For example, you could work with your child on a list of “Things that Matter to Me” which can be shared with your child’s health team (see example below).  Children and young people vary in how much they want to participate in talking with others themselves. Be aware of their wishes.

• Be prepared for lots of questions later on and remember you don’t have to have all the answers

• Remember your child or teen is more than their diagnosis – keep the focus on their strengths, interests and day to day activities that they enjoy. It is important to keep positive and hopeful.

• Use your medical team to access support and reach out for extra help if you feel you need it.

People you can get support from include

• Hospital Social Worker

• Child Cancer Foundation

• Your child’s oncologist

• Child Therapist

• The Cancer Society

Advocacy

• Talking with your child gives you a chance to fully understand their needs and wishes.

• This provides you with unique opportunities. You can help your child convey their needs and wishes and you can advocate on their behalf, particularly if they are too young or unable to convey this themselves.

• Talk with your child’s health care team about how much your child is aware and what they know about their diagnosis and treatment.

• Share information about your child that will help them provide the best care. Some children and young people want to talk themselves about their needs and wished. For others a “Things That Matter to Me” list from your child may help with this.

• Remember that over time your child’s wishes and needs are likely to evolve and change – be responsive to this and share with the health team as needed.

Example of a Child’s “Things That Matter To Me” list

• Please don’t talk about me like I’m not here.

• Please don’t talk down to me. No baby talk!

• Please don’t ignore me because I don’t speak.

• Please bring someone who speaks my language.

• Please don’t talk loudly.

• Please answer my questions… all of them. And be honest!

• Please don’t turn on the light when I’m asleep.

• Please ask before touching me.

• Please tell me who you are if I don’t know you.

• Please knock before coming into my room

From Your Conversation Starter Guide For Caregivers of a Child with Serious Illness ©2021 The Conversation Project.

Useful Animations that can help

Some short, animated films have been developed to help children and young people understand a range of topics about brain tumours and their treatments.

• Imaginary Friend Society is a series developed on behalf of the Pediatric Brain Tumor Foundation (USA) that explains complicated cancer topics in a way that children can understand and that takes “the scare out of cancer care”. These can be accessed by visitingthis website: imaginaryfriendsociety.com/

• The Brain Tumour Charity (UK) has also published several animations to help children understand a range of topics about brain tumours and their treatments. Refer to this link to view these: https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/support-families/animations-explaining-brain-tumours/

Some common questions children ask and some possible responses…

• What is a brain tumour?

• An example of a possible description for a young child

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.

• An example of a possible description for an older child

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.

• Did I catch it/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.

• How did I get it? Was it my fault?

No brain tumours are nobody’s fault. Very often we just don’t know why people get brain tumours.