Parents sometimes feel that by not telling a child or teenager about a cancer diagnosis, they are protecting them.

Trying to protect children from difficult news, worry and distress is natural. But not explaining what’s happening may make them feel more vulnerable. It’s important to give them the chance to talk openly about their fears and worries. If they overhear things, they may interpret things wrongly.

Children know when something serious is affecting the family and people they are close to. They’ll notice unusual comings and goings, phone calls and hushed conversations. They may also pick up on changes in how you and other adults around them are feeling and behaving.

Understandably, you may have concerns that delay or stop you explaining what’s happening. You may feel it will bring home the reality of the situation, when you’re still struggling to come to terms with it yourself. The thought of coping with a child’s distress on top of everything else may seem overwhelming. Or you may worry that family life will be disrupted and that cancer will become the focus, instead of things like school and exams.

The benefits of talking

There are many benefits to being open and involving children and teenagers:

• Knowing what’s going on may make them feel more secure and less anxious.
• It gives them permission to talk – they can ask questions, say how they feel and talk openly to you.
• It shows you trust them and that you don’t feel you need to guard what you say all the time.
• It can make you all feel closer – your children can help support you, and you can help support them.
• It might help them cope better with difficult situations in life.

The effects of not talking

Wanting to protect children from difficult news is natural. But if you don’t talk to them, they may:

• feel frightened because they don’t know what’s going on
• feel alone with lots of worries and no one to talk to
• worry that something they’ve done or thought has caused the cancer
• think they’re not important enough to be included
• imagine something worse than the reality
• think cancer is too terrible to be talked about misunderstand situations and get the wrong idea about what’s happening.

Children often find out about what’s going on even when they haven’t been told – for example through friends whose families know each other. Finding out like this can have a negative effect on their relationship with their parent(s). They may wonder if they can trust you, or other adults, to tell them about important things.

Children also pick up things from the television, internet and overheard conversations, but this information isn’t always accurate. If you don’t speak to them about what’s really happening, they may continue to believe this information.

You’ll probably need time to cope with your own feelings before talking to your children. You might want to speak to your nurse specialist or a psychologist or counsellor before talking to your children. Try to talk to them before they pick up on things and start to worry.

Be as prepared as you can. Make sure you have all the information you need and that you understand it. You may want to think about the questions a child might ask and the words you will use to explain things.

Find out what they already know. You can sometimes get very worried about telling them something and then find out they know more than you think.

If you’re a two-parent family, it’s usually best to tell your children along with the other parent – but this can depend on how you usually talk as a family. If you’re a single parent, you may feel able to, and want to, do it on your own. Or you could do it along with someone close who your child knows and trusts. You could also ask your nurse specialist or a psychologist or counsellor to be there.

Even if you’re not doing the telling, it’s still a good idea to be there so you know what’s been said and how the child has reacted. However, some parents do prefer to let their partner tell the children and not to be there themselves. You should do whatever feels right to you.

Choose a time and a place when your children are most likely to listen and feel at ease, and where you won’t be interrupted. There may be places where you and your children feel more able to talk. Make sure it’s somewhere they will feel able to express their feelings.

If you have more than one child, it’s best to tell them together if you can. This prevents them feeling like their siblings know more than them. If you’re telling them separately, do it as close together as possible. Some children may wonder why they were told last.

Try to avoid only telling the older children, as this can place a burden on them.

Avoid telling them just before bed time, as they may not be able to sleep. If it’s unavoidable, make them feel supported and answer any questions they have before they go to sleep.

You might want to tell them somewhere away from home. It might make it easier to speak openly, and when the conversation is finished you can both walk away. It might be a place you go back to every time you want to speak about your cancer.

As a parent, you’re the expert when it comes to your child. You know the best way of communicating with them, how they might react and what support they’ll need.

If you want to, you can practise what you’re going to say beforehand and think about some of the questions they may ask. But don’t try too hard to have the perfect conversation. If you plan too much, a question from your child may throw you. Children can ask questions you weren’t prepared for, and these may come hours or days later.

Choose a time when you’re feeling fairly calm. See the first conversation as a starting point. It’s the beginning of an ongoing process of gradually giving your children small, relevant pieces of information and reassurance.

Allow the conversation to be directed by your children’s reactions and the questions they ask. Listen and keep it as open as you can. Try asking questions that encourage them to express what they’re thinking, rather than a one word or two-word reply.

Some examples of openers are:

• ‘Tell me about…’
• ‘How can we…?’
• ‘What do you feel about…?’

It’s best to be honest with children. If they think you’re being vague or hiding something, they may find it hard to believe they’re being told the truth. Don’t make things sound less serious than they are. But, depending on your situation, you can be hopeful and let them know that although cancer is serious, many people get better. Tell them that you and your doctors are doing everything possible to get you well again.

It’s fine to say you don’t know if you can’t answer all of their questions. Tell them you’ll try to find out and will tell them when you know.

Teenagers may react differently from younger children or adults when they’re told a parent has cancer. They may ask for more information about the diagnosis and what it means for family life. They may also need more time to work through their feelings.

As with younger children, teenagers will benefit from being told the truth about the cancer and your treatment plan. It’s best to encourage them to ask any questions they have, and to answer these gently but honestly. Remember that although teenagers value their independence, they’ll still look to you for reassurance and support.

You’ll need to use words your children will understand. These will vary depending on their ages. Here are some tips to help you through the conversation:

• Find out what they know and correct any misunderstandings.
• Use simple, straightforward language and short sentences to explain what’s going on.
• Keep information relevant to the current situation, rather than things that will happen in the future.
• Be as specific as you can – children worry more when things aren’t clear, or if they hear adults whispering.
• Ask them if there’s anything else they want to know.
• Take it at the child’s pace and be prepared for them to react in their own way.
• Repeat the information for younger children, especially those under seven, as they may not take it in or understand.
• Children also need to understand how their lives and routines are likely to be affected.

You’ll usually want to tell your close family and other adults who your children know and trust. Let them know what you’ve told your children – it’s important that your children get the same message from everyone. Let your children know who you’re going to tell and why.

It’s usually helpful to have a conversation with your children about who else needs to know, for example a teacher, club leaders or their friends’ parents. Older children may have strong feelings about who should and shouldn’t know, so it’s good to talk to them about this.

It’s a good idea to let nursery or school teachers and the school nurse know. It will mean that they can be sensitive to your child’s needs, and will help them understand any unusual or difficult behaviour. Ask them to let you know if your child shows any signs of worrying behaviour. You could also ask them to support your child by giving them more one-to-one time, or you can involve the school nurse or counsellor.

If you have a teenager, they may not want to be seen as different from their friends. But it’s important that certain people know and can be there to support them if they need it.

Teenagers may be facing exams or coursework at school, college or university. If they’re finding it difficult to keep up with their studies, it may be a good idea to speak with one of their teachers. You could find out if any support is available or whether they can extend your child’s deadlines.

You should speak to the teenager before doing this. School or college may be one of the few places where things still feel ‘normal’, and they may be hesitant about letting people know. Asking them will also reaffirm their trust that you’re telling them everything and including them.

It may be important to speak to their school or college about how they’re coping. Teachers or staff can offer support, and they may notice issues or behaviours that aren’t always apparent at home.

Macmillan has a toolkit called Talking about cancer. It’s aimed at helping teachers discuss cancer openly and honestly with 9 to 16-year-olds. The pack contains everything teachers need to give young people the facts about cancer. It includes lesson plans and DVD clips.