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THE PRIVATE WORLDS OF DYING CHILDREN by Myra Bluebond-Langner

THE PRIVATE WORLDS OF DYING CHILDREN

By

Pub Date: June 1st, 1978
ISBN: 0691028206
Publisher: Princeton Univ. Press

How terminally ill children cope with dying: an anthropologist's distressingly revealing study of leukemic children, their stages of understanding and behavior under stress. Bluebond-Langner observed children in a midwestern hospital and found that dying children not only recognize the seriousness of their illness but struggle to hide that knowledge from parents and medical personnel who think concealment and denial the best policy. Children consider information volunteered by adults the least reliable and come to count on each other for facts and gossip--the bathroom is a great gathering place. Furthermore, they learn the meaning of ""relapse"" and ""remission,"" anticipate the side effects of different drugs, and begin to practice certain distancing strategies. Parents lose their standing as authority figures, replaced by hospital staff members who weasel out of discussing the children's conditions with them. Children participate in this ""mutual pretense"" because, Bluebond-Langner maintains, it is the only competence left to them. The few parents who opt for ""open awareness""--telling the children the truth--report very mixed results: it doesn't free them from conflict, and very often the hospital staff avoid children who confront them openly. She concludes that children can be told the truth but should learn to discuss it selectively: ""The answer lies in devising a policy that allows the children to maintain open awareness with those who can handle it, and at the same time to maintain mutual pretense with those who want to practice it. . . . Children will honor whatever rules are set up."" She doesn't consider the feasibility of changing professional attitudes. Although developed from a doctoral dissertation, this is relatively unacademic in tone--half consists of a ""play"" set in a pediatrics ward. Its findings, especially if read in the first stages of a child's illness, could help parents uncertain of how to proceed, even if the author's closing recommendations are debatable.