What do children need to know?

Providing children and young people with information about the treatment, why and how it is done, and possible side effects can prepare them for what to expect and help them adjust.

When my ex-wife got breast cancer, I talked to my little girl about how the treatment caused changes, like Mummy would get very tired and her hair would fall out, but we expected her to be okay.

Simon, father of a four-year-old

Learn more about:

Outlining the treatment plan
Explaining side effects
Preparing for hospital and treatment centre visits
How to play with a child in hospital

Understanding treatment

It can help to understand the treatments and their side effects. Don’t be afraid to ask the doctor to explain anything that is confusing or unclear. The nurses and social workers at the hospital are also good sources of information, as are Cancer Council’s 13 11 20 Information and Support consultants.

Request copies of Cancer Council’s booklets on different aspects of cancer treatment by calling 13 11 20, or download PDF versions here. Once you have a good understanding of the treatment, you will probably find it easier to explain it to your kids and answer their questions

Listen to podcasts on Explaining Cancer to Kids and Family Dynamics and Cancer

Outline the treatment plan

Let the children be your guide as to how much they already know and how much they want to know about treatment.
Start with questions such as “Have you heard the word chemotherapy?” or “Do you know what radiation therapy is?” Then explain the basic facts using language they can understand.
Check if your kids want to know more, and let them know that they can ask questions throughout the treatment period if they have other queries or concerns.
Talk to kids about how to search for accurate information online, to avoid incorrect or unhelpful information.
Keep them up to date with how long treatment will take and the length of the hospital stay.
Explain who will be taking care of the person with cancer and the different ways they will help.

Explain side effects

It’s important to prepare children for treatment side effects, such as physical changes after surgery, weight changes, fatigue, nausea and hair loss.

Explain that not everyone gets all side effects. People who have the same cancer and treatment will not necessarily have the same side effects. Doctors know what happens to most people having a particular treatment but can’t be exactly sure what will happen to individuals.
Tell your children what side effects to expect, based on what the doctor has said, and how these may change how the person with cancer looks or feels. Say you’ll let them know if the person does start to experience these side effects.
Talk about ways your children can help the person with cancer deal with the side effects (e.g. help shave the person’s head, help choose a wig). Such actions can be empowering and make your children feel like they’re useful.
Let them know that the doctors will try to make sure treatment causes as few side effects as possible. They should know that side effects usually go away after the treatment is over, but this often takes time – hair will grow back, scars will fade.
Reassure your children that they will get used to the changes. Point out that the person having treatment is still the same person as before.
Side effects do not mean the person is getting worse. It’s common for kids to get upset on chemotherapy days when they see the effects of the drug, such as fatigue or vomiting. They may worry that the treatment is making the person worse or that the cancer has progressed. Let them know that the side effects are separate to the cancer symptoms. If there are no side effects, reassure them that this doesn’t mean the treatment is not working.
Assure them that even if some side effects mean the person with cancer can’t participate in activities or appears drowsy, it doesn’t mean they’re not interested.
Explain to them how much of the side effect is considered normal. This can be especially important for older teenagers who might worry about when they should call for help.

“I knew that my hair falling out might be very traumatic for the kids. I invited two girlfriends around and involved the children in a self- indulgence day. I got one girlfriend to make scones while the other friend shaved my hair off. There was lots of laughter, the children got involved in the shaving, and then we all put on make-up and did our nails. It was a great afternoon. There was no trauma. The children were happy to see I was happy and that I could still look wonderful with make-up on.”

Anna, mother of two children aged 9 and 13

Prepare for hospital and treatment centre visits

Cancer treatment can involve short but frequent visits to the hospital as an outpatient (day treatment) or a longer stint as an inpatient (staying overnight). A visit to hospital can seem strange and confronting for a person of any age, but especially for children. You might worry that your children will get anxious if they see people with cancer in hospital or having treatment. If you are a parent with cancer, however, you may worry about your kids being separated from you.

Ask your kids if they want to go to the hospital or treatment centre. If they would prefer not to, don’t insist on them coming in.

If they are keen to visit, the following may help prepare them.

Before children enter the hospital room, tell them what to expect and what they may notice: the equipment; different smells and noises (e.g. buzzers, beeps); how the patients may look (e.g. tubes, bandages, a drip or catheter bag full of urine hanging on the side of the bed); doctors and nurses might keep coming in and out to check on the patients.
You may be able to arrange with the nursing staff for children to look at pictures or see some of the equipment in an empty room before visiting the person with cancer.
If your kids are reluctant to go to the hospital, their first visit could just be to the ward lounge room. Reassure them that this is okay and that they can send a card or call, if they prefer.
Let your kids decide how long they want to stay. Small children tend to get bored quickly and want to leave soon after arrival. They may want to help by getting you a drink or magazine from the hospital shop.
Have a friend or relative come along. They can take the kids out of the room if they feel overwhelmed and then take them home when they’re ready to leave.
Bring art materials, books or toys to keep them occupied. Older children may want to play cards or board games with you. Or you could simply watch TV or listen to music together.
If you have to travel for treatment and your children are unable to visit, use video calling on a mobile phone to communicate. Go here for more tips on staying connected with your kids.
If the hospital stay will be longer, ask the kids to make the room cosy with a framed photo or artwork they’ve made.
After the visit, talk to them about how they felt and answer any questions they may have.
Ask the staff for support. Nursing staff and hospital social workers are sensitive to children’s needs during this difficult time and could talk to your children if necessary.

How to play with a child in hospital

If your child is visiting a sibling or friend in hospital, explain beforehand that the other child may not feel well enough to play or talk much, but will be happy that you care enough to visit. If the child with cancer is interested in playing, here are some activities you could try:

card games
board games
drawing games, such as folding a sheet of paper in three then the children take turns to draw the head, middle and legs of a character
charades
shared imaginary play with toys
simple craft
using your laptop or tablet to watch a favourite movie or program together.

This information was last reviewed in December 2018. View who reviewed this content.

We thank the reviewers of this book: Professor Kate White, Chair of Nursing, The University of Sydney, NSW; Sarah Ellis, Psychologist, Behavioural Sciences Unit, Kids with Cancer Foundation, Sydney Children’s Hospital, NSW; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Chandra Franken, Program Manager – NSW & ACT, Starlight Children’s Foundation, NSW; John Friedsam, General Manager of Divisions, CanTeen, NSW; Keely Gordon-King, Cancer Counselling Psychologist, Cancer Council Queensland; Stephanie Konings, Research Officer, CanTeen, NSW; Sally and Rosie Morgan, Consumers; Dr Pandora Patterson, General Manager, Research and Youth Cancer Services, Canteen, and Adjunct Associate Professor, Cancer Nursing Research Unit, The University of Sydney, NSW and Visiting Professor, Faculty of Health and Life Sciences, Coventry University, UK; Suzanne Rumi, Consumer; Michael Sieders, Primary School Program Manager, Camp Quality.

We would also like to thank the health professionals, consumers, organisations and editorial teams who have worked on previous editions of this title, and we are grateful to the parents and young people whose real-life stories have added to the richness and relevance of this book.

We thank and acknowledge Dr Paula K. Rauch, MD, Founding Director, Marjorie E. Korff PACT (Parenting At a Challenging Time) Program and Associate Professor of Psychiatry, Harvard Medical School, whose research and writing on helping parents talk to their children about cancer was used as source material for this book and has been adapted in several sections: pages 8 -11, Different views of cancer; page 24, Answering key questions: Are you going to die?; pages 26 -27, Involving the school or preschool; pages 30 -31, Prepare for hospital and treatment centre visits; and page 37, Encouraging family time. We also thank the American Cancer Society for permission to use and adapt material on pages 8 -11 from its book Cancer in Our Family: Helping children cope with a parent’s illness (2013); Macmillan Cancer Support for permission to use its book Talking to Children and Teenagers When an Adult Has Cancer (2013) as a source of information; Jessica Watt, Oncology Social Worker, Children’s Hospital Westmead, for her contribution on page 18, When another child has cancer; Diane McGeachy, Hobart Counselling Centre, for contributing material for page 38, Spending one-on-one time; and Dr Ranjana Srivastava, and The Guardian for permission to adapt €œHow do you tell your children you have cancer? €_x009d_, on pages 21 and 47 – full story is available at https://www.theguardian.com/society/2015/nov/29/how-do-you-tell-your-children-you-have-cancer.