Talking to kids about cancer

When someone is diagnosed with cancer, adults are sometimes unsure about discussing the situation with children. Parents and other adults can feel overwhelmed by their own anxiety and fears, and their first impulse may be to protect children from feeling those same strong emotions. 

– Susie, mother of three children aged 12, 13 and 16

There are many reasons that a straightforward and honest discussion can actually make children feel more secure.

You are the expert

• To help you discuss the difficult subject of cancer with children, there are evidence-based, practical strategies that can build upon your existing strengths and knowledge.
• Sometimes it may take a few attempts before you find the best way for your family.
• Remember that you are the expert on your children, and your understanding of their individual personalities and needs can guide you.

Secrecy can make things worse

• Children who are told about the illness of someone important to them tend to cope better than children who are kept in the dark.
• Secrets can be difficult to keep. It can add to your stress – you may worry about whether you should tell, or feel guilty if you don’t say something. You may need to change your routine without your children knowing why, which can be confusing for them and tricky for you.

You can’t fool kids

• Children are observant. No matter how hard you try to hide a cancer diagnosis, most children will suspect something is wrong. Even if it’s not a parent but a close relative, such as a grandparent, this can cause stress that kids will usually pick up on.
• Kids will notice changes at home, such as your sadness, whispered conversations, closed doors, an increase in the number of phone calls or visitors, and possibly less attention being shown to them. These signs may be more obvious to older children and teenagers, but even young children can sense a change.
• A lack of information can lead to increased distress in young people who have a parent with cancer.
• If your kids suspect there’s a serious problem and you haven’t told them about it, they may make up their own explanation. They will then spend a lot of their coping energy on adjusting to this imagined situation, which will often be worse than the reality.

They have a right to know

• Children can feel hurt if they suspect or discover they have been excluded from something important to them and their family. Sharing information shows you trust and value them, which can enhance their self-esteem.
• The diagnosis may also be a chance for your kids to develop emotionally. They may learn about living with uncertainty and how to cope when life doesn’t go to plan. This helps build their resilience, the ability to bounce back from difficult situations.

They might find out from someone else

• Ideally, children should hear about a cancer diagnosis from their parents or someone delegated by their parents, particularly if it is the parent or a relative or close friend who has cancer.
• If, as a parent, you tell friends and relatives about cancer in the family, but you don’t tell your children, there is a chance your kids will hear about the cancer from someone else or overhear a conversation. Children often pick up on adult conversations even when it seems like they are busy with their own activity and not paying attention. They may even look for a way to listen without being noticed.
• Overhearing the news can give your children the wrong idea. They may think the topic is too terrible for you to talk about, or that they are not important enough to be included in family discussions. It can also affect their sense of trust that their parents will tell them the truth.
• Children may also misunderstand information and think a situation is much worse than it is. They may feel afraid to ask questions. They might worry in silence or spread incorrect information to other children in the family.
• Many children will pick up on a few key words and turn to the internet for answers, which can lead them to unreliable websites. In the complex world of cancer and online resources, parents are often the best pathway to truthful, specific and accurate information.

Kids can cope

• When kids are in a family affected by cancer, it can be a challenging time for them. You may wonder how they will get through it, but with good support, most children can cope and will display resilience.
• A key factor in helping kids get through difficult times is a close relationship with an adult who values and supports them, and accepts them for who they are. That adult can be a parent, a grandparent, a favourite aunt or uncle, or a family friend. Whatever the connection, an adult who provides support can help a child through tough times.

Children need a chance to talk

• Talking to your children about cancer gives them the chance to tell you how they feel and lets them know it is okay to ask questions.
• Don’t be afraid to express your own feelings or cry. As long as you are not out of control, it can be helpful for young people to know that emotions such as anger and sadness are normal reactions and that adults feel them too.
• Sometimes kids will open up to adults who are not their parents. They may feel guilty about burdening a sick parent or taking up a healthy parent’s time, so they will confide in someone else like a teacher or step-parent.
• As a parent, it is important to encourage your kids to talk about their thoughts and feelings with you or someone else who is trustworthy. A strategy that might be helpful is to ask them to write down five trusted adults outside the immediate family. These are the people your children can turn to if for any reason they feel like they can’t talk to you about something.

Infants have little awareness of illness, but are aware of their parents’ anxiety and other feelings. They are also aware of periods of separation from their parents and can get upset when the physical presence of a loving parent is missing. Toddlers may react to physical changes in their parent or relative or the presence of side effects (such as vomiting).

Possible reactions

• newborns and infants: becoming unsettled, especially if they need to be weaned suddenly
• newborns and infants: wanting to breastfeed more frequently for emotional comfort
• becoming fussy and cranky
• becoming clingy
• change in sleeping or eating habits
• colic
• toddlers: tantrums, more negativity (saying ‘no’)
• return to, or more frequent, thumb-sucking, bedwetting, baby talk, etc.

Suggested approaches

• Maintain routines – ask any carers to follow the established schedules for your baby or toddler as much as possible.
• Give plenty of physical contact (e.g. hugging, holding, extra breastfeeds) to help them feel secure.
• Ask family members and friends to help with household tasks and care, observe play for clues to how a child is coping.
• Use relaxation tapes, calming music or baby massage.
• Share your feeling and fears with others.

By the age of 3, children have a basic understanding of illness. Younger children may believe that they caused the illness (e.g. by being naughty or thinking bad thoughts); this is called magical thinking. They may also think cancer is contagious. It is natural for young children to be egocentric and think everything is related to them – Did I cause it? Can I catch it? Who will look after me?

Possible reactions

• regression, e.g. starting to suck their thumb again
• comfort-seeking behaviours, such as using a security blanket or special toy
• fear of the dark, monsters, animals, strangers and the unknown
• trouble falling asleep or sleeping through the night, refusal to sleep
• nightmares, sleepwalking or sleeptalking
• bedwetting
• stuttering or baby talk
• hyperactivity or apathy
• fear of separation from parents or other significant people, especially at bedtime and when going to preschool
• aggression (e.g. hitting or biting), saying hurtful things or rejecting the parent with the cancer diagnosis
• repeated questions about the same topic, even if it has been discussed several times

Suggested approaches

• Provide brief and simple explanations about cancer – repeat or paraphrase when necessary.
• Talk about cancer using picture books, dolls or stuffed animals.
• Read a story about issues such as nightmares or separation anxiety.
• Assure them that they have not caused the illness by their behaviour or thoughts, nor will they catch cancer.
• Explain what children can expect and describe how schedules may change.
• Reassure them that they will be taken care of and will not be forgotten.
• Encourage them to have fun.
• Listen and be alert to their feelings, which they may express through speech or play.
• Let children get physical activity every day to use up excess energy and provide an outlet for any anxiety or aggression.
• Continue usual discipline and limit-setting.

During the primary school years, children become ready for basic information about cancer cells. Some children may have heard about cancer, but may not know how it starts. They could fill gaps in their knowledge with simple cause-and-effect logic – for example, they sometimes feel that their bad behaviour might have caused the disease. They may understand that people, including parents, can die. 

Possible reactions

• irritability
• sadness, crying
• anxiety, guilt, envy
• physical complaints (e.g. headaches, stomach-aches)
• trouble sleeping
• sudden worry about the well parent’s health
• separation anxiety when going to school or away to camp
• regressive behaviour
• hostile reactions like yelling or fighting, including towards the sick parent
• poor concentration, daydreaming, lack of attention
• poor marks
• withdrawal from family and friends
• difficulty adapting to changes
• fear of performance, punishment or new situations
• sensitivity to shame and embarassment
• trying to be extra good

Suggested approaches

• Be alert to their feelings (expressed through speech or play) and let them know you care.
• Use books to explain cancer and treatment.
• Use sport, art or music to help children express and manage their feelings.
• Assure them that they did not cause the cancer by their behaviour or thoughts, and that it is not contagious.
• Reassure them about their care and schedule and tell them that it’s ok to have fun.
• Let them know that their other parent and relatives are healthy.
• Give them age-appropriate tasks to do around the house.
• Tell them that you won’t keep secrets and will always tell them what is happening.
• Help them understand that what their schoolmates say may not always be right – encourage them to check with you.
• Discuss the issue of dying if your kids bring up the topic.
• See also ideas for preschoolers.

During adolescence, young people start to think more like adults and may want lots of information. They are able to understand complex cause-and-effect relationships, such as illness and symptoms. Although they understand that people are fragile, they are more likely to deny fear and worry to avoid discussion. They may prefer to confide in friends, and act as if friends are more important than family.

Possible reactions

• wanting to be more independent and treated like an adult
• regression – wanting more nurturing, becoming very insecure and dependent on parents, or lapsing into previous behaviours, such as watching children’s TV shows
• critical view of how adults react to or handle the situation
• depression or anxiety
• worry about being different
• anger and rebellion
• poor judgement and risk-taking behaviour (e.g. binge drinking, smoking, staying out late, unsafe sex)
• withdrawal
• apathy
• physical symptoms from stress (e.g. stomach-aches, headaches)
• more likely to turn feelings inward, which means adults are less likely to see reactions
• worry that they will also get cancer, particularly if they’re a daughter of a woman with breast cancer

Suggested approaches

• Notice any differences in their behaviour and ask them about it – this can open the door to a conversation about their concerns.
• Encourage them to talk about their feelings, but realise they may find it easier to confide in friends, teachers or other trusted people.
• Provide plenty of physical and verbal expressions of love.
• Talk about role changes in the family.
• Provide privacy as needed.
• Encourage them to maintain activities and friendships – talk about finding a balance between going out and staying at home.
• Set appropriate limits.
• Provide opportunities for counselling.
• Don’t rely on them to take on too many extra responsibilities.
• Provide resources for learning more about cancer and getting support.
• Let them know that you don’t always want to talk about cancer – you still want to chat about things like homework, sport and friends.
• See also ideas for younger children.