Children need to be told that they are seriously ill, that they will be spending some time in the hospital, that the treatment will last for a long time and is sometimes painful, that the treatments are usually successful, and that the doctors and nurses are experts and will provide the very best care available. Depending on the child's age, this could vary from saying, "Part of your blood is sick and we need to go to the hospital for medicine to make it better," to reading books together and answering hundreds of questions. The name of the disease should be used. Even if children do not hear this from their parents or the treatment team, they will probably hear it from another child.
My daughter Kathleen Rea knew she had cancer when she was 3. She knew that her motor oil wasn't running her engine right—but she called it cancer.
Young children need to be reassured that they did nothing to cause the disease. It is important that they understand the disease is not contagious and they cannot give it to their siblings or friends. They need to have procedures described realistically, so that they can trust their parents and medical team.
My 4-year-old daughter told me very sadly one day, "I wish that I hadn't fallen down and broken inside. That's how the leukemia started." We had explained many times that nothing she did, or we did, caused the leukemia, but she persisted in thinking that falling down did it. She also worried that if she went to her friend Krista's house to play that Krista would catch leukemia.
Children should understand that it is expected they will have many questions throughout their treatment, and they should be assured that their questions will receive honest answers. Parents need to let their children know that being frightened or upset is normal, indeed is felt by parents and children alike. Gentle and honest communication is essential for the child to feel loved, supported, and encouraged.
When I told Christine (3 years old) that she had a disease in her blood, her first concern was that I might leave. Over the years, I have repeated many times that I would always be with her, and that I would make sure that there were never any surprises. (This is difficult sometimes in the hospital setting, but it can be done.) She is very artistic and wanted me to draw a picture of the cells that were a problem. We drew lots of pictures of white cells being carried off by chemo drugs to be "fixed." Although many of the other parents successfully used images of good cells killing off bad cells, I thought that would upset my extremely gentle daughter. So we imagined, drew pictures, and talked about chemo turning problem cells into helpful cells.
Barbara Sourkes, PhD, explains the importance of first understanding the child's question prior to responding:
Coping with the trauma of illness can be facilitated by a cognitive understanding of the disease and its treatment. For this reason, the presentation of accurate information in developmentally meaningful terms is crucial. A general guideline is to follow the child's lead: he or she questions facts or implications only when ready, and that readiness must be respected. It is the adult's responsibility to clarify the precise intent of any question and then to proceed with a step-by-step response, thereby granting the child options at each juncture. He or she may choose to continue listening, to ask for clarification, or to terminate the discussion. Offering less information with the explicit invitation to ask for more affords a safety gauge of control for the child. When these guidelines are not followed, serious miscommunications may ensue. For example, an adult who hears "What is going to happen to me?" and does not clarify the intent of the query may launch into a long statement of plans or elaborate reassurances. The child may respond with irritation, "I only wanted to know what tests I am going to have tomorrow."
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