Talking With Your Child About Cancer
If you choose to tell your child yourself, talking to others might help you decide what to say. Health professionals such as your child’s doctor, nurse, or social worker can offer ideas. Talk with parents of other children with cancer. Thinking about what you want to say, talking it over with other concerned adults, and rehearsing it with someone close to you will help you feel more at ease.
In talking about a serious illness with a child, the proper mode of communication should be one of openness and honesty. An important consideration in talking about a serious illness with a child is that the child's thoughts, feelings and experiences are quite different from the adults and have to be judged accordingly. The adult can then share life as far as it can be shared in the child's understanding and give answers that can be built on as the child's understanding grows.
Some guidelines for communicating information to children about illness are as follows:
- Begin on the child's level. It is important to gear information to the child's developmental level. Vocabulary and concepts have to be consistent with the child's. Often it is helpful to begin with the child's experiences. "You know your grandma has been ill."
- Let the child's questions guide. Adults can often say too much. It is usually better to begin a dialogue with some basic information and then let the child's questions direct the conversation. Provide brief and sensitive answers. Again, it is important to try to understand what the child is asking. Children's questions often involve cognitive and affective dimensions. We need to address both the question and the underlying feelings. It can be helpful, sometimes, to use the child's questions as an opening to a dialogue by asking for further clarification of his question, by offering reassurance in response to the question, or, by validating the feelings underlying the question. The point is that the response should be open ended enough to allow the child to address all concerns and questions.
- Provide opportunities for the child to express feelings. Children's feelings during an illness run the gamut of emotions. They include sadness, anger, guilt, ambivalence and anxiety among others. It is important that the child have the opportunity to comfortably express these feelings. Telling a child that they need not feel angry or guilty, or otherwise discounting their emotions, neither allows further communication nor helps. Adults can help by listening, validating the child's feelings and sharing their own feelings and the ways they cope with them.
- Encourage feedback. It is important to ask the child to summarize what they have heard. This allows the opportunity to clarify any misunderstanding so that you can be sure the child's understanding is accurate.
- Be sensitive to the child's readiness to communicate. While communicating information the child needs to know, understand that for varied reasons the child may not be ready, desire or have the energy or skills to communicate at any point in time. Don't force the issue. Let the child know that you remain available. Again, a child's questions will generally tell you what he wants to know and what he's ready to discuss.
- Use the child's natural expressive means to stimulate dialogue. Children often express themselves in stories, games, play, art, or music. Using these approaches with children can be extremely helpful since they are more comfortable to the child, offer direct opportunities for expressing feelings and provide an opportunity for dialogue.
- Share faith, religious beliefs and/or philosophical reflections. Our faiths, whether expressed in religious beliefs or philosophical reflections, help us to face and transcend crises such as illness and loss. It is often helpful for adults to model these for the child to show the child the ways that one's faith helps one cope with crisis. For this to be helpful, however, these reflections should not be pronouncements that end dialogue and inadvertently add to the child's burden. 'We must trust God's will and believe" offers a rigidity that can confuse understanding and confound feelings. On the other hand, "it's so hard to understand why this is happening"
facilitates further thought and discussion allowing one to share one's own faith questions and reaffirm that our faith and beliefs help in coping even when there are no easy answers or explanations.
- Utilize other resources. There are many resources that can encourage dialogue. Books and films can be shared experiences that facilitate conversation between parent and child. Individual counselors and peer group programs are resources that may free a child to respond in ways that would not be comfortable with parents. Also, identify with the child other adults in their world with whom they may be comfortable to discuss their problems.
- Hospital visits. The child should be given some degree of control on the subject of hospital visitations. In making such a decision, the child must have information, options and support. Fully inform the child what the visit to the hospital will be like. Explain how the person looks, feels and responds. Explain any equipment connected to the patient, as well as, the presentation of other patients who may be sharing the room. Staying home alone may not be a real alternative, prompting a decision to go to the hospital even when the child is not fully comfortable. It would be better if the child's choice included an alternative such as staying with a trusted adult. If they go to the hospital, children should also know they have choices that will be respected, such as how long they will stay and how close they get to the patient. If they decide not to go, detail other options of support they can give the patient such as sending cards, letters, tapes, drawings or making phone calls. Finally, whether or not the child goes to the hospital, the role of the adult is to support the child in his understanding, self-acceptance and sense of well being.
- Some Important Don'ts. Don't lie. Don't make promises you can't keep. Don't be afraid to say, "I don't know".
“What Should I Tell the Kids at School?”
Children with cancer are concerned about how their friends and schoolmates will react. This is especially true when they have missed a lot of school or return with obvious physical changes such as weight loss, weight gain, or hair loss. Encourage your child to keep in touch with close friends and classmates. Friends often want to know what happens when a child is away from school. Encourage your child to talk honestly about the disease and the kind of treatment being given. Suggest that your child reassure friends that they cannot “catch” cancer from anyone. You or one of the teachers at school also may be able to talk to other students.
Try to help your child understand that not all people, including some adults, know about cancer. People who don’t understand cancer often act differently or may give your child incorrect information.
Such talks with others may cause your child to have doubts and fears despite all your reassurance. Ask your child about conversations with others so that you can correct any misunderstandings.
You may want to ask your child’s doctor, nurse, or social worker about a school conference, classroom presentations, or a school assembly that includes a question and answer session to help other students better understand cancer and what is happening to your child. Your child’s teachers or the school counselor can help.
Your child will learn two important lessons about how people react to illness. First, some people, no matter what they are told, may act different because they do not know much about cancer. Second, good friends will remain friends. They know your child is still the same friend as before.
Like adults, children with cancer feel uncertain, anxious, and afraid at times. But, unlike many adults, children often are not able to talk about their fears. Instead, they may express their feelings by being unpleasant, boisterous, or bossy, or by being quieter than usual. As a parent, you know how your child usually behaves, so you will probably be the first to notice any differences. Play is a way for a child to express and reduce fears and anxieties, and you should encourage it. Drawing pictures and playing with puppets, dolls, and even medical supplies are ways children may show that they don’t understand what is happening or that they need more reassurance and love.
Some children find it hard to express their feelings. These children may have nightmares or eating or behavioral difficulties. They also may not do as well in school. Some children resume behaviors that they had outgrown, such as bedwetting or thumbsucking. You should talk about these things with your child’s doctor, nurse, social worker, or school counselor.
What if my child can't speak?
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