UNCERTAINTY - A CONCEPTUAL-MODEL APPLIED TO PARENTAL STRESS ASSOCIATED WITH PROGNOSTIC UNCERTAINTY IN PEDIATRIC ONCOLOGY

The diagnosis of cancer in a child results in significant stress for t he family. Among the stresses the family must face are the real threat to the child's life; the confusion of working with a multidisciplinar y team; the pain experienced by the child from invasive medical proced ures; and the volume of information presented about diagnosis, treatme nt, and prognosis. The prognosis for a particular child is meaningful to the physician since it indicates the probability for survival, but it can be threatening to the parents because it forces them to acknowl edge the possibility that their child may die. The physician cannot gu arantee that an individual child will be cured. Thus, uncertainty as a concept is commonly used to characterize the stress of parents who mu st watch their child undergo 1 to 3 years of intensive therapy for whi ch a cure cannot be assured. Despite use of the term ''uncertainty'' i n the literature, we are not aware of any models that describe how par ents cope with uncertainty. In this article we present two approaches that we assume are the extremes of a continuum. The first, or ''realis tic,'' approach assumes that some parents cope most effectively with u ncertainty by emphasizing the present. The second, ''idealistic,'' app roach assumes that other parents cope with uncertainty by emphasizing the future. Awareness of these two approaches may help health care pro fessionals recognize and support parents in either approach. With this awareness, team members can try to help families strike a balance. Ho wever, extremes approaches on the continuum-which we consider to be un healthy-will require further professional intervention, e.g., psychiat ric assessment. An explanation of this model, some theoretical conside rations for the concept of uncertainty, and two illustrative cases are then presented.