A large part of being a parent is concerned with protecting your child from hurt or pain so the instinctive reaction may well be to protect your son/daughter from the reality of their diagnosis and treatments. This may increase your child’s fears and distress.

For this reason, it is important for the child, particularly older children/teenagers to be given a chance to talk about his/her illness, what it means to him/her and how he/she feels.

Children/teenagers who sense their parents are not able to talk about their disease, often in turn try to protect their parents further by withholding their own fears and concerns. These children may then start to believe their situation is much worse than it actually is.

It’s better to understand and ask questions about the disease than to fear the unknown.

One of the most difficult decisions for parents to face is what to tell their child or teenager.

It is generally felt that the child/teenager should be told as much about their illness as their age allows him/her to understand.

Parents have often tried to protect their child from the truth. However, most children know what is happening even though they have not been told directly. Children, even as young as 4 or 5, pick up pieces of information in the following ways;

• • Overhearing discussions.
  • Being sensitive to parental concerns and upsets.
  • Wondering about extra restrictions, attention, treatment and medicines.
  • Other children on the ward or their peers at school having been told information and passing it on to them.
  • Other direct ways eg the child may ask questions to the staff when the parent is not present.

The question is not whether or not you should tell your child, but what and how to tell them.

Furthermore, try to convey the feeling that you are willing to talk and want to help them with any fears or questions they may have.

A gentle and honest approach is the most important:

• Lying to a child will only lead to mistrust and a problem for future relationships as the child soon senses something is wrong when; for example, they cannot go home, perhaps start to feel very sick or lose their hair, etc.
• If a parent cannot answer a question, then it’s better to say “I don’t know but I will find out” than to make something up.
• It is important to remember that just because your child hasn’t talked about his/her illness or feelings and fears related to it (including issues of death), it does not mean they don’t have any fears or questions.

As a parent you are the best judge of your child’s moods but keep in mind your child may just need you to gently raise the conversation – children will “switch off” when they have had enough. Some things take time to digest and understand or work through (just like it takes time for adults). So it is important to talk only to the extent they are able to listen. However, always leave them with the feeling they can talk about it again whenever they are ready.

Gentle reminders may be good ways of raising the subject, such as:

“Do you have any more questions?”
“Is there anything you want to ask?”
“You must be pretty frightened about all of this…..”

What you tell your child will depend on his/her age, maturity and your own attitudes and feelings. Some parents like to tell their children by themselves at the Hospital, others prefer to wait until they go home or may ask the doctor to explain it to the child.

Ultimately, what is most comfortable for you and your child is most important.

What to tell toddlers and preschoolers:

• Use simple language to tell your child they are sick and that the nurses and doctors are working hard to make them better.
• Do not avoid using the name of the disease or the word cancer, as they will often hear them elsewhere.
• Tell your child they will need lots of different medicine, which sometimes will hurt or make them feel yucky.
• That they will need to stay in Hospital many times before they get better but reassure them that you will stay with them.
• Tell them they can bring their favourite toys into Hospital.

What to tell primary school aged children:

Use simple language and be honest as children in this age group may already have some knowledge of cancer and/or will pick up information along the way.

• Use age appropriate language to explain they have a serious illness and the doctors and nurses are working hard to make them better.
• Do not avoid using the name of the disease or the word cancer, as they will often hear them elsewhere.
• Make sure they know they can ask anything at any time and if you don’t know the answer you will find out for them.
• Reassure them constantly that no-one has caused this and they have done nothing wrong.
• Tell them that you cannot “catch” cancer from another person.
• Explain they may have many stays in Hospital and need many different medicines that may make them feel sicker before they feel better.
• Tell them that some medicines may make their hair fall out but that it will grow back again when they are better.
• Always be honest if the child asks if something will hurt or not (for example; a needle).
• Try to be prepared for difficult questions when they arise so the child knows they can talk about their sometimes very frightening feelings, whenever they arise.
• Reassure them you will stay with them and help them when they need to have treatment or painful procedures.
• Some children may want to know if they will die from their illness. There is no perfect answer to this extremely difficult question. One suggestion is to say you don’t know for sure but most children get better and the nurses and doctors are going to help us do all the right things to try and get them better too.

Adolescents

• An open and honest conversation about your teenager’s diagnosis, proposed treatment, potential side effects and possible outcomes is vital.
• Be aware and respectful of your adolescent’s needs and ensure open and detailed communication throughout treatment. Some may express anger and reluctance to know details. Respect their wishes and allow them to set the pace at which discussions about their situation occur.
• Most teenagers have some knowledge of their disease, but never assume they know everything they need to and be sure to correct misconceptions if they arise.
• Make sure he/she knows they can ask anything at any time and if you don’t know the answer you will find out for them.
• Ensure your teenager is actively involved in all of the decisions that will affect their care and never withhold information. This process allows the teenager to have some control of their situation.
• Be aware that the diagnosis of a life threatening illness as a teenager can be incredibly difficult as it is at a time when the child/teenager wants more control and independence in their life. Unfortunately the treatment requirements and consequent side effects tend to increase their dependence on their parents – it is important for parents to be aware of this and encourage the teenager to take on some responsibility or exert some independence during the course of their treatment, even though they are ill.