After parents have learned that a child has a life-threatening medical problem, they often must then gather the emotional resources to tell others— the child, his or her siblings, their own parents, friends, teachers, and others. Physicians, social workers, child-life specialists, psychologists, and others can provide guidance and emotional support as parents undertake these difficult conversations. Time pressures, financial constraints, and other circumstances may, however, limit what they can offer.
The ones who tell me are my friends.
Benjamin, child with cancer (Bluebond-Langner, 1978, p. 188)
With the advice and support of the child’s care team, parents typically decide when and what to tell their child about his or her diagnosis and prognosis.1 If parents choose not to include the child when a physician first meets with them to discuss diagnosis, they may welcome help in preparing for a later discussion with the child, perhaps even having the child’s physician convey the news or at least be present. Older children may want information to come from the physician directly. Although communication clearly must be tailored to the child’s developmental status and clinical status, little systematic research is available to guide parents and clinicians about the effects of different styles and amounts of communication for children of different ages and other characteristics (Stevens, 1998; Goldman, 1999).
Qualitative studies of children living with life-threatening medical conditions make clear that they are often aware at some level that they will not live to grow up or that they may die soon (Bluebond-Langner, 1978; Sourkes, 1995a). Such knowledge does not depend on explicit communication. Based on what is happening around them and to them, even young children may develop realistic apprehensions that they are going to die. Bluebond-Langner described the “five-year old boy, lying uncomfortably on his back, [who] when asked if he wanted to be turned over, said ‘No, I’m practicing for my coffin’” (1978, p. 191). Another child, asked what he was going be when he grew up, replied “a ghost” (1978, p. 194).
Once it was common to try to “shield” dying children, and often adults, from knowledge of their condition. Now more agreement exists—in principle, if not in practice—that children with life-threatening medical
The nature of the child’s illness may influence parents. For example, parents of children with HIV infection or AIDS have sometimes been reluctant to inform the child of his or her status (AAP, 1999a; Gerson et al., 2001). This can harm children, especially older children who recognize that something is not right with them. With adolescents ready to experiment with sex, failure to discuss such a diagnosis can also increase the potential for harm to others.