Develop open communication with your children regarding the illness

It is often difficult to decide just how much information should be shared with your child about their illness. You may be concerned that information about the disease and treatment may cause your child to be anxious. Usually, however, it is best to share information openly and honestly with your child. Otherwise, children pick up bits and pieces of information and fill in the rest, often inaccurately. If parents and doctors talk outside the hospital or clinic room, the child may think that things are much worse than what they have been told, and worry needlessly. In the case of chronic illness, honesty IS the best policy (not "hear no evil, see no evil, speak no evil").

Of course, it is best to give your child information using simple language that she can understand easily. It is good to give your child only the information she needs, and not focus on what “might” occur in weeks, months or years. Some children may feel that their illness is a punishment, and that they did something to cause it to happen. Similarly, siblings may feel responsible for their brother’s or sister’s illness, especially if they had fought or argued shortly before the diagnosis. All children should be assured that illness is something that happens, usually without any known cause.

They should be assured that the diagnosis is not anyone’s fault. Brothers, sisters and friends may also worry that they could “catch” the disease by being around the child with a chronic illness. It is important to help them understand the difference between communicable diseases and many chronic illnesses of childhood. Be available to your child with a chronic illness and your other children to talk about the disease, treatment or impact on the family. The child with the illness may feel guilty for causing the family such challenges. The siblings may feel abandoned, jealous, worried, scared or resentful of the child with the illness. All of these feelings are very normal and will be best addressed by your love and support.

Answer questions honestly and straightforwardly, and acknowledge that the situation is difficult, but one your family can handle together. Your child's health care providers can give parents specific suggestions regarding explaining the particular illness. Despite the difficulty of having a child with a chronic illness, family bonds often strengthen as a result of the experience.

Skills list

1. Learn about your child’s illness and treatment
2. Commmunicate openly with your children
3. Help your child learn to cope with life changes
4. Help your other children, spouse and extended family cope
5. Prepare your child for procedures and hospitalization
6. Maintain as much normalcy as possible
7. Set limits, and provide discipline
8. Continue normal expectations for your child
9. Communicate with your child’s school
10. Help your child explain the illness to others
11. Accept help graciously
12. Empower your child
13. Help your child find a buddy with the same illness
14. Handle (unsolicited) advice 
15. Take care of yourself

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For more information, please contact:

Kathy Davis, MSEd, PhD
kdavis2@kumc.edu
(913) 588-6305