The Triggers of Heightened Parental Uncertainty in Chronic, Life-Threatening Childhood Illness

Abstract

Advances in the treatment of childhood diseases have created a population of technology-dependent and medically fragile children whose life expectancy is unknown and whose future quality of life is unpredictable. Seven commonly occurring events were found to precipitate increased parental anxiety by triggering a heightened awareness of the uncertainty concerning the child's survival. These triggers are presented, with supporting data from parental interviews and published autobiographical accounts, as a set of causes, contexts, conditions, and interactions that account for predictable variation in the intensity of parental awareness of uncertainty. The findings reported here constitute one aspect of the grounded theory of living under conditions of sustained uncertainty for families who have a child with a chronic, life-threatening illness. That theory, it is proposed, is related to the larger chronic illness trajectory framework of Strauss and associates. Implications for practice are suggested.