Whether it’s telling a child that they have cancer or that a parent has cancer, the thought is horrifying and overwhelming. How does a parent get to the point of processing it themselves, let alone trying to convey those confusing facts to a child?
It’s important that children understand that their illness or their parent’s illness is cancer, with the name of the cancer (ie. leukaemia, brain tumour, sarcoma), because they will hear that language used by others. Not telling using accurate language doesn’t protect children, but rather can create mistrust and further confusion. In some instances, children who don’t know details will use their thoughts and assumptions to fill in their knowledge gaps – perhaps, for example, thinking that an illness is a punishment for something they did wrong. Most children already know when something is wrong, and not knowing what can exacerbate stress, anxiety and fear.
Creating open lines of communication with a child from the outset can help to build trust, can make them feel more included and can facilitate better cooperation with procedures, tests and medications necessary during treatment. Talking to them calmly, with simple language and without extreme emotions will mean they are likely to develop less fear and anxiety from the outset.
Main concerns for a child: they did something to cause the cancer, they’re going to be abandoned or left uncared for, and cancer is contagious (a common misconception in children). None of which are true. Children essentially need to know:
the correct name of the cancer
the part of the body where the cancer is
what treatment will involve
how their own lives will be affected
A child’s understanding of illness and their reactions to the news will vary depending on their age, temperament and family experiences. Sometimes, even those at similar ages will respond differently. So here is a basic overview that might help you think about possible reactions and how to best support children, depending on their age:
Infants and Toddlers:
This age group cannot understand the concept of disease or cancer but may pick up on parents’ anxiety. Separation from their parent or carer can be unsettling, and older toddlers particularly can pick up on changes in a parent’s physical appearance or abnormalities in their usual routine. These children need familiarity, reassurance and a feeling of security. Anyone unsettling event will not traumatise a child long-term if they are comforted, cuddled and reassured by a calm parent or trusted adult through it.
Children at this age:
may become more fussy, cranky, unsettled, infants may want to breastfeed more frequently, older children may need more cuddles
may tantrum more often, or become clingy
may regress in developmental milestones or other behaviours
often become fearful of procedures and environments that are not familiar
may benefit from relaxation tapes or calming music
don’t need lots of detail or complicated language
can’t think far ahead, so don’t need to be told about next week’s plans, etc.
need routines maintained, with usual established schedules, as much as possible
Preschoolers:
This age group usually have a basic understanding of illness and will be able to understand cancer if explained simply. Some may believe they caused the illness with their behaviour or thoughts, some may think they can catch or pass it on. Children are very self-centred at this age – it’s a normal part of their development – which means that everything they experience is related to them. Above all, they need reassurance and familiarity, especially amidst new environments or unfamiliar people.
Children at this age:
may regress in developmental milestones or other behaviours
may become more fearful or display unusual comfort-seeking behaviours
may start waking in the night or have trouble going to sleep
may develop signs of emotional dysregulation (such as aggression, hyperactivity, lack of focus, over-reactions, etc)
may start fearing separation from parents or other significant people (even at bedtime) or start saying hurtful things
need reassurance that they didn’t cause the cancer and they won’t be abandoned or forgotten
need reminding about what’s going on frequently
do think ahead and can become apprehensive about what’s to come, so need explanations about what to expect, how things might change
can see adults’ emotions, when they are afraid or stressed
need honesty to build trust (even about procedures that will cause some pain, ie. don’t say “it won’t hurt”)
won’t be helped by thinking that the treating team or hospital staff are ‘bad guys’, so don’t offer apologies for what the doctors and nurses are doing to them, just comfort
need routines maintained, with usual established schedules as much as possible, and usual discipline, limits and rules
can respond well to picture books, dolls or stuffed animals to talk about cancer, or stories to help explain concepts or fears
need encouragement to continue expressing their feelings through speech or play
need opportunities to continue to play and take daily physical activity
Primary School Children:
This age group generally have a basic understanding of sickness, and in later primary years, they can sometimes need more details about cancer cells and how cancer treatment works. They still might sometimes think that their behaviour or thoughts have caused the cancer (using simple cause-and-effect logic to fill knowledge gaps), and may understand that people can die from cancer.
Children at this age:
may have physical manifestations of their psychological stress, such as headaches, abdominal pain, dizziness, sore parts of their body, etc.
may refuse to go to school or participate in usual activities
maybe more anxious about separating from parents than usual, or become fearful of new situations
may regress in developmental milestones or other behaviours
may develop obsessive/anxious behaviours to deal with anxiety (such as nailbiting) or to exert some control (such as dietary restrictions)
may display irritability, anxiety, guilt, sadness, envy and can even show hostility towards anyone, including the sick family
may withdraw from some relationships, including close family members
may have difficulty keeping up with school work, concentrating, adapting to change
may develop sensitivity to shame, embarrassment or making mistakes
need to allowed opportunities to express themselves through sport, art, play, writing or music, or learn through stories and play
need reassurance that they didn’t cause cancer, it’s ok to have fun, and they will be taken care of
need to continue age-appropriate tasks around the house, need usual boundaries and discipline maintained, and have routines/schedules/extra-curricular activities maintained as much as possible
need reassurance that open communication will be used
may need their school to know so appropriate support is offered
need help to understand that what peers and friends say is not always right, and to continue checking in with a parent or safe adult
need to discuss treatment and death appropriately if they bring it up
Teenagers:
This age group have started thinking more like adults, without the emotional capacity of adults. They have started developing abstract thought processes, and can consequently understand more complex cause-and-effect relationships (eg. illness and its symptoms). They are more likely to think about the cancer in terms of its symptoms and effect on daily life, such as school, sport and friends. However, they understand illness and might have detailed questions, teenagers are more likely to deny fear and stress so as not to display emotion or discuss their own feelings.
Teenagers are likely to be at the receiving end of cancer-related messages from different sources. It can be important for parents to try and find out where they’re getting their information from and reassure them that they are available to answer questions and talk.
Children at this age:
may become quite insecure and regress to increased dependence on parents or other child-like behaviours
may become critical of adults offering support, preferring to talk to friends and prioritising their friendships over family relationships
may become depressed or anxious, angry or rebellious, withdrawn or become apathetic
may worry about their differences (appearance, lifestyle, etc), and not fitting in, and may try to hide their true feelings
may start exhibiting poor judgment and risk-taking behaviour
may have physical manifestations of their psychological stress, such as abdominal pain, headaches, lightheadedness, etc.
may have difficulty keeping up with school work, concentrating, adapting to change; may regress academically
may worry about themselves getting cancer
need some independence and responsibility, need to be included in more mature, adult discussions and decisions about the cancer and treatment, but also need usual boundaries and discipline to be maintained
need to be noticed, need their reactions, feelings and behaviour changes to be noticed and discussed with them to encourage them to keep lines of communication open
need gentle physical gestures to affirm and reassure (hugs, arm around the shoulder, etc)
need to be warned about possible role changes in the family, as well as likely physical changes that may come as a result of cancer
need respect and privacy, but with the knowledge of boundaries, respecting others’ privacy and using social media appropriately
need to be encouraged to maintain activities and friendships
need to be offered the opportunity to engage in counseling
need low expectations from everyone
need to be aware of external resources and supports they can turn to
need reassurance that their parents are still the same people and can be turned to for advice about issues outside of cancer
Talking about death
Some parents face the additional challenge of walking their child through confronting death – whether it be their own or their parent’s. Each family has its own beliefs about death, and how and when that discussion about death happens is a personal decision. There are many resources available through cancer organisations, bereavement counselors and hospital palliative care teams. However, above all, children need to be reassured that they will not be alone and the healthcare team will be there to support the family, and help manage pain and other symptoms.
Key tips
Practise before telling the child about their or their parent’s cancer, seek advice from others who have been in the same position or the healthcare team.
Consider if it might be better to have another adult in the room when telling the child – whether that be another family member or a healthcare team member.
One single conversation will not be enough and could be more complex and confusing. Rather it’s important that there are numerous, frequent, simple conversations to maintain lines of communication.
It’s important to keep it open, honest, encourage questions, and try to make it more fact-based, keeping extreme emotions out of it as much as possible, so as not to add to fear and anxiety. If there are unknowns, it’s important that information is not made up.
Allow the child to share feelings so they don’t feel alone.
Explain the meaning of cancer-related words (eg. chemotherapy, tumour, etc) to them so they don’t become more confused when hearing them in hospital/clinic.
Discuss treatments and procedures ahead (bit by bit, with simple language), what they will entail, and maintain honesty about possible pain or other side effects.
There are supports available through most hospitals who can assist with advising and guiding these talks, including social workers, counselors and spiritual/religious advisors.
If you need to speak to someone about these issues, or would like some guidance, advice or support, please contact us at Rare Cancers Australia on 1800 257 600 or email support@rarecancers.org.au