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Home > Research Articles > What To Tell Kids With Cancer


Tuesday, March 18, 2003

What To Tell Kids With Cancer CancerPage.com - March 17, 2003 ) - When a child is diagnosed with cancer, parents may be at a loss about how much to tell their child. According to a report in the February 8 edition of the British Medical Journal, most parents take on the role of information executives, managing the information flow to their child. Sometimes the kids like it that way, but in many cases, children feel "marginalized" and that they aren't getting all the information they want. Dr. Bridget Young and colleagues at the Department of Psychology at University of Hull in England talked to 13 young cancer patients, aged 8 to 17, and their parents. They wanted to see how information about the illness was delivered from the professional medical staff to parents and their children. They found a wide range of preferences and styles for talking with children about the difficult subjects related to a serious, possibly life-threatening illness. Parents wanted to protect their children from worry and fear. All chose to do that by managing the information their children were told. Many parents preferred to hear the diagnosis without the child present so that they could have time to "compose" themselves and assume the role of the "strong and optimistic" adult in charge. They were also concerned that having the child present might prevent them from asking some questions. In most cases, however, details of the illness were told to the sick child. In one case, however, the parent did not inform her child about the severity of the diagnosis until much later in the illness and then felt guilty about holding back so long. Children were both comforted and concerned by the level of information they received. Many of the kids said they were glad their parents served as gatekeepers and didn't burden them with many of the details of their illness and treatment. But some also felt "marginalized" by the process. They were afraid to ask questions for fear of looking "stupid," one 15-year-old girl said. A 15-year-old boy complained that sometimes his parents and medical personnel would talk about him as if he wasn't there. An eight-year-old patient however said he was glad his parents acted as "buffers." "I think they should keep it off the children until they're a little bit older. And they understand a bit more," he told the researchers. The kids viewed their parents as performing several functions as information managers: Facilitators of communication whose presence during meetings with health professionals helped the kids feel more comfortable when asking questions. Envoys for the children in meetings with health professionals. Communication buffers to shield the children from disturbing information.Human databases to research and catalogue information about the illness.And finally, as communication brokers who could take the detailed, scientific information provided by health professionals and make it easier to understand for the child. Age appeared to have little bearing on what kids wanted to know and when they wanted to know it. The researchers found that some of the youngest patients wanted detailed information while older teens just wanted "the basics." In an email interview with cancerpage.com, Young said parents face a very difficult task in talking to children about their illness but usually do a very good job of it. "However, our work does suggest that, particularly in the early days, parents may be overwhelmed by the diagnosis and their urge to protect their children may not always concord with their child's desire to be involved in communication," she said. Complicating matters even further is the fact that different children want different amounts of information and those desires can change over the course of an illness. The American Medical Association counsels parents to talk calmly but openly with their children about their illness. Guidelines are offered on how much information a child can handle depending on his or her age: Children up to 2 years of age cannot understand cancer. They may cry or seem uncooperative during examinations or treatments. Provide comfort and let them know it is okay to cry when something, such as a needle stick, hurts. Two- to 7-year-olds might think that their illness is a punishment for something they have done, said, or thought. Explain that this is not true, and that treatments and tests are to help get rid of the cancer and make them well. You may want to tell them that cancer is "bad" cells and that treatment helps "good" cells win. Seven- to 12-year-olds can understand more details about cancer and can grasp that getting treatment and going to the doctor can help them get better, even though the treatments may cause temporary pain and discomfort. Children 12 years and older usually can understand that cancer causes symptoms such as feeling tired. Explain in detail how their treatment can help them and how medicines work to make them eventually feel better. Young says that her group's research found "no evidence to suggest clear age differences in how much children want to know... More work would help to give some clearer answers but there is also a great danger of seeing children's information needs as defined by their age." Flexibility, she concludes, will always be necessary. SOURCE: Email exchange with Dr. Bridget YoungBritish Medical Journal 2003; 326: 305-308 Journal of the American Medical Association April 2002; 287 Content Provided By: CancerPage.com