Talking about cancer

When someone is diagnosed with cancer, adults are sometimes hesitant to discuss the situation with children. Parents and other adults can feel
overwhelmed by their own anxiety and fear, and their first reaction may be to protect children from those same strong emotions. They may be
concerned about their children’s reactions or worry the diagnosis will disrupt their children’s school performance or friendships.

However, there are many reasons why a straightforward and honest discussion can help children.

You are the expert

To help you discuss the difficult subject of cancer with children, this information offers evidence-based, practical strategies that can build upon your existing strengths and knowledge. Sometimes it may take a few attempts before you find an approach that suits your family. Use your understanding of your children’s individual personalities and needs to 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. Trying to keep the diagnosis secret can be difficult. 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 daily routine without your children knowing why, which can be confusing for them.

Keeping secrets teaches children that it is okay for family members to lie to each other if a good reason exists. In turn, children may keep information from their parents if they think it will upset them.

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 who has cancer but a close relative, such as an aunt or grandparent, this can cause stress that kids will usually pick up on.

They 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 changes to family schedules. These signs may be more obvious to older children and teenagers, but even young children can pick up on change. They will work out that a secret exists, but that it should not be discussed. Not knowing the reason for the secret may leave them feeling
powerless or disconnected from everyone else, without knowing why.

Honesty can build trust with your child

Children can feel hurt if they suspect or discover they have not been told something important that affects their family. Sharing information shows you trust and value them, which can boost their self-esteem and ease their concerns. Hearing bad news is better than the worry they feel when they don’t know what’s happening.

The diagnosis may also be a chance for children to learn from their parents how to deal with complex feelings. Together you can all find ways to  bounce back from difficult situations (resilience).

They might find out from someone else

Ideally, children should hear about a cancer diagnosis from their parents, guardian or a trusted family friend, particularly if it is the parent, a relative or close friend who has cancer.

If you tell friends and relatives about cancer in the family, but you don’t tell your children, there is a chance your kids will learn about the cancer from
someone else or overhear a conversation. Children often listen to adult conversations even when it seems like they are busy with their own activity  and not paying attention. They may also look for a way to listen without being noticed.

Overhearing the news can make your children feel upset and confused. 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.

Children may also misunderstand information and think a situation is much worse than it is or make up their own explanation to fill in what they don’t understand. They may feel afraid to ask questions. They might worry in silence or spread incorrect information to other children in the family.  Teenagers, and even young children, may pick up on a few key words and search the internet for answers, which can lead them to unreliable websites.

Kids can cope

When a family is affected by cancer, it can be a challenging time for kids. You may wonder how they will get through it, but with age-appropriate
information and good support, most children can bounce back from this difficult situation.

Children and young people learn about emotions and how to express them by watching others – especially their parents. A key factor in helping kids
get through difficult times is to role model how to recognise, talk about and manage a range of emotions, e.g. “I’m feeling sad about Grandma’s diagnosis and I think I need to go for a walk”.

It is okay to admit to your child that what you are telling them is upsetting – let them know it’s natural to have strong feelings. We can’t stop kids from
feeling sad, but if we share our feelings and give them information about what’s happening, we can support them in their sadness.

Children need a chance to talk

Talking to your children about cancer gives them the chance to ask questions. Encourage your kids to share their thoughts and feelings, but don’t be surprised if they don’t want to talk when you do, and don’t push if your kids prefer not to talk. Suggest that children keep a journal to write down questions or thoughts that come up.

Sometimes kids, particularly teenagers, may feel guilty about burdening a sick parent or taking up a healthy parent’s time. So they will open up to an
adult who is not their parent. That person may be a grandparent, an aunt or uncle, a family friend or their best friend’s parent.

Some parents don’t want to tell their children at all and try hard to keep the diagnosis secret. People have their own reasons for not sharing the diagnosis with their children, including cultural differences, family circumstances, or an earlier death of a close relative from cancer. Sometimes you may want to wait to find out more about what the diagnosis means before telling your kids.

If you want to share the diagnosis with your children but your fear of saying or doing the wrong thing is keeping you from having this difficult conversation, talk with a psychologist or social worker, who may be able to help you develop a strategy. Keep in mind that talking about cancer often becomes easier over time.

You may be reading this information because you work with children who have been affected by a cancer diagnosis. Before talking to someone else’s child about cancer, it is important to understand and respect the wishes of the parents.

Cancer can have a range of meanings for different groups of people. Some cultures believe that cancer is caused by bad luck or that it is contagious
or always fatal. Others may believe that the cancer has been sent to test them.

It is important to respect different ways of coping. If a family wants to keep a diagnosis private, you can call Cancer Council 13 11 20
or visit CanTeen who may be able to provide a way for children and other family members to discuss their feelings and concerns in a confidential setting.

Infants have little understanding of illness, but may pick up on their parents’ anxiety and other feelings. They are aware of periods of separation from their parents and can get upset when a parent is not there. Toddlers may react to physical changes in their parent or relative (such as hair loss) or noticeable 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
• watch play for clues to how a child is coping
• use relaxation tapes, calming music or baby massage

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). They may also think they can catch cancer. It is natural for young children to think everything is related to them – Did I cause it? Can I catch it? Who will look after me?

Possible reactions

• return to behaviour that is developmentally younger, e.g. sucking their thumb
• 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
• use picture books, dolls or stuffed animals to talk about cancer
• 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 they can expect; 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
• arrange opportunities for children to be physically active every day to use up excess energy, anxiety or aggression
• continue usual discipline and limit-setting

In the early primary school years, children have a basic understanding of sickness, and by later primary years, they are ready for more details about cancer cells. They may use simple cause-and-effect logic to fill gaps in their knowledge; 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, anxiety, guilt, envy
• sadness, crying
• physical complaints, e.g. headaches, stomach-aches
• trouble sleeping
• sudden worry about the well parent’s health
• school refusal
• separation anxiety when going to school or away to camp
• returning to behaviours that may be developmentally younger
• hostile reactions, e.g. yelling or fighting, including towards the sick parent
• poor concentration, daydreaming, lack of attention
• unexplained change in school marks
• withdrawal from family and friends
• difficulty adapting to changes
• fear of new situations
• sensitivity to shame and embarrassment
• trying to be extra good
• nailbiting

Suggested approaches

• look for clues in their stories and play for how they feel, and let them know you care
• talk about cancer and treatment using books
• 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 they cannot catch it
• reassure them that they will be taken care of and tell them that it’s okay to have fun
• let them know their other parent and relatives are healthy
• give them age-appropriate tasks to do around the house
• tell them you won’t keep secrets and will always let them know what is happening
• suggest letting school know
• help them understand that what their schoolfriends say may not always be right – encourage them to check with you
• try to continue after-school activities to maintain routine and to encourage fun
• discuss the issue of dying if your kids bring up the topic

During adolescence, young people start to think more like adults. As their ability for abstract thought develops, they are able to understand complex cause-and-effect relationships, such as illness and symptoms. With increasing maturity, teenagers understand that people get sick, but are more likely to deny fear and worry to avoid discussion.

Possible reactions

• wanting to be more independent and treated like an adult
• becoming very insecure and dependent on parents, or lapsing into previous behaviours, such as watching children’s TV shows
• criticising support offered by adults
• preferring to confide in friends, and acting as if friends are more important than family
• depression or anxiety
• worry about being different and not fitting in
• anger and rebellion
• poor judgement and risk-taking behaviour, e.g. binge drinking, smoking, staying out late, unsafe sex
• withdrawal
• apathy
• physical symptoms caused by stress, e.g. stomach-aches, headaches
• hiding feelings – adults are less likely to see true reactions
• changes in academic performance
• worrying they will also get cancer (e.g. daughter of a woman with breast cancer or son of a man with prostate cancer)

Suggested approaches

• notice any changes in their behaviour and ask them about it – this can lead to a conversation about their concerns
• encourage them to talk about their feelings, but realise they may prefer to talk to friends or other trusted people
• use words and gentle touches to the arm or back to let them know you love them
• talk about role changes in the family
• provide privacy, as needed; highlight the importance of respecting privacy and using social media appropriately
• encourage them to keep up activities and friendships; talk about finding a balance between going out and staying at home
• set appropriate boundaries
• arrange opportunities for counselling
• don’t expect them to take on too many extra responsibilities
• let them know of resources for learning more about cancer and getting support
• reassure them that you don’t always need to talk about cancer – you still want to chat about things like homework, sport and friends