You are an important member of your child’s healthcare team. We rely on you to help us understand your child’s needs so that we can provide the best possible care. You know best what works well for your child, so your input is essential.
Some suggestions on ways that parents can become involved in their child’s care and treatment include:
- Participate in your child’s care (giving medicines, attending appointments).
- Talk to child life staff for suggestions on helping your child and his/her siblings cope with the diagnosis and treatments.
- Take care of yourself. If you don't take care of yourself, you will soon be unable to care for anyone else.
- Eat regularly
- Make special time for other children you may have.
- Allow friends and family to express their love and support by helping you.
- If work schedules, family schedules, and distance to the hospital permit, alternate transportation and care with a relative or other support person during hospital stays. This allows some time off to care for yourself and be with children at home. It also allows both parents or other care givers to be part of your child’s treatment.
- Be your child’s advocate: represent your child’s needs and wants to others.
- Ask questions. You might find it helpful to write down your questions and bring them to your child's appointments.
How to Tell Your Child
It can be a challenge to find a way to talk to your child about their illness. Studies show that children know that they have a serious illness even though adults try to hide it from them. It is virtually impossible to keep your child from knowing. Children figure out that they are ill by watching their parents, overhearing others, and putting the pieces together. Without concrete information, children may use their imagination and fears to understand what is going on. Their imaginary explanations may be more frightening than the truth.
Most professionals agree that children should be told as much about their illness as their age and maturity allows them to understand. Doing this can be difficult for parents. You may be thinking, “I know I should tell my child — but how and when?”
In most cases, gentle, honest communication is best. Be supportive and loving, but as open as possible with your child. If you are not honest, your child can lose trust and security. Knowing the truth often helps children cope better with treatment. It is probably best to talk with your child soon after diagnosis. Waiting gives the imagination more time to develop fears that may be difficult to overcome.
Try to choose a quiet time and place where you can be alone. Some children will not talk openly about their feelings or concerns. Although your child may not ask many questions, he/she may still feel very scared. If this is the case, don’t be afraid to ask them questions. Asking what he/she is thinking and feeling does not create new fears, but gives permission to express the fear he/she may already have.
Be prepared to deal with questions about death. Refusing to discuss death may deny your child an outlet for some strong and very frightening feelings. It will also deny you the opportunity to offer comfort and reassurance.
Give your child many opportunities to talk with you. If you don’t have an answer to a question, don’t be afraid to say “I don’t know.” Tell your child that you will try your best to find the answer. Make sure that you follow through with your promise.
You may feel sad, afraid, or very upset and have a hard time hiding these feelings from your child. You may not want to burden your child with these strong feelings, but your child can often sense how you feel. To protect their parents from additional worry and sadness, many children hide their feelings and don’t ask questions. They may think their parents are angry with them for causing trouble. It is often helpful to share your feelings with your child and teach them it is okay to express feelings. Reassure your child that, although you are upset by the diagnosis, you are not angry with him/her.
Children of all ages experience feelings of guilt and anger, similar to those you may have experienced yourself. Some children feel the cancer is a punishment for being bad. Children need to be told they did nothing to cause their illness. Remind your child that all of these powerful feelings are not bad, and it is okay to feel sad and to cry. Teach your child that the best way to deal with feelings is to talk about them or play them out with someone he/she trusts.