CANCER RESEARCH UK
Telling children about cancer takes bravery, honesty and patience, at a time when we might not be feeling very strong ourselves. Annalisa Barbieri speaks to experts in child psychology and cancer support about when and how to have the discussion
Our natural instinct is to protect our children, to make things better for them. Telling them a loved one has cancer contradicts all of this. At a time when you yourself are trying to come to terms with something huge and life-changing – maybe it’s your partner or parent who has cancer, maybe it’s you – you will need to break down the news into bite-size, not-so-scary chunks for the children in your life. And then be there to support them.
If you find yourself in this difficult position, this is what I’ve learned. It does of course depend on the age of the child and their personality – you need to be your own judge – but these are good guidelines to keep in your back pocket. The experts I spoke to were Martin Ledwick, head information nurse at Cancer Research UK, and Jane Elfer (childpsychotherapy.org.uk), a child and adolescent psychotherapist who works with parents and children to explain cancer.
Should you tell your children at all?
Unless there are compelling reasons not to, resoundingly, yes. Cancer and death are part of life, and helping them realise this encourages resilience and trust. It’s also important they realise that not everyone with cancer dies of the cancer. Adding secrecy and lies to an already fraught situation helps no one. Don’t lie, don’t leave them to overhear things.
“This can be enormously damaging,” says Ledwick, “as they then imagine what they don’t know – and that can be worse than the reality. The worst thing you can do is pretend everything is okay when it isn’t and try to hide it, then they get suspicious and worry even more.”
I believe in telling children the truth
When should you tell your children?
This depends on how much you know, how certain things are, and what the prognosis is. Don’t tell children about every cancer scare, this will just make them anxious. But when you have concrete news – it’s cancer – then you may want to tell them straight away. Of course, if they are very young and the prognosis for the person with cancer is good, you may want to wait.
“I believe in telling children the truth,” says Elfer, “but if you are dealing with very little children, and the person with cancer may live for a long time, then you may want to delay telling the child.”
“Wait and see what you find out,” says Ledwick. “There are always complicated dynamics in a family so you may have to take things into consideration. Ask yourself: ‘Are we still normal or have things changed to a degree that we need to start talking?’ By that, I mean if things are changing in the family, it’s time to tell children, before they start to imagine things.”
Building trust, says Elfer, is really important: “If they know they can trust you, both with their emotions and with you telling them the truth, they will come back to you if something is bothering them.”
Be prepared for questions, but don’t panic if you don’t know the answer
Where should you tell them?
Whenever possible, in a place where they feel safe and secure, that’s quiet and where they will be able to “get away” if they need to regulate their feelings. That’s usually at home. Also allow time for them to ask questions, but don’t be surprised if the questions don’t come until later.
What should you tell them?
Be honest and age-appropriate. Keep it simple and allow time for the information to sink in – but reassure them that cancer isn’t catching. Elfer offers a good, simple primer to helps kids understand cancer: “Sometimes the cells in our body don’t grow in an ordinary way but form to make cancer.”
Be prepared for questions, but don’t panic if you don’t know the answer. Both Elfer and Ledwick reiterated several times that it is perfectly OK to not know – however counterintuitive this can seem.
Depending on the question, suggests Elfer, you may want to say: “‘That’s such a good question, but I don’t know the answer – shall we see if we can find out?’ Or you could say: ‘Let me write that down, and I’ll ask the doctor next time I see them.’ This lets them realise their questions are legitimate and important and you will find out for them.”
But equally, if you say it, mean it and do ask a clinician or look it up.
Questions about cancer: what I wish I’d asked – video
Some things to look out for
For children, things revolve around their life. So they may have very practical questions such as: “Can Grandad still play football with me?” Some of these questions may seem odd, trivial even, but it’s about their world and how it may be affected by this news, and they’re trying to make sense of that. The flip side of this is that children internalise things – so they can also think they caused the cancer in some way. They may equate mummy being tired from looking after them with mummy being tired with cancer, so it follows for them that they caused it. That’s why it’s really important to stress that it’s nothing to do with anything they have done.
Some children may want to know the causes of cancer, so think about what you’re going to say here, especially if the cancer may be lifestyle related. Never lie or tell half-truths. Children will fill in the gaps, often with something much more upsetting.
Children – especially teenagers – may need to walk away to regulate their feelings. Don’t misinterpret this as them not caring. “It’s them regulating how much they can take in,” says Elfer.
Explain that it’s OK to cry and it’s also OK not to cry
Be aware that the pastoral care goes beyond the point at which you tell them. They may ask you questions when it’s least convenient, while you’re driving or cooking, for example. Children often talk more when in the car as they have you as a captive audience, and there is no direct eye contact if you are driving. Elfer suggests a good response here might be: “That’s such an important question – will you remember to ask me later, when we can talk about it?”
Explain that it’s OK to cry and it’s also OK not to cry. The way I explained it to my children is that we were on the same train, on the same journey, but all sitting at different windows with different views, so we react differently.
Be prepared for children to be upset. “That is the hardest thing for a parent to react to,” says Ledwick. “If a child gets very upset you want to rescue them from that. You can’t change what’s happening but you can be there for them.”