Parents of Hospitalized Chronically Ill Children: Competency in Question

Abstract

Health care professionals are striving to offer family-centered care. In the care of a sick child, the family, and more specifically the parents, play an important role in promoting wellness. In fact, when a chronically ill child is cared for in the home, the parents fill the role of full-time, primary health care providers. Not only does illness become integrated as an on-going facet of daily living, but repeated hospitalizations often become a significant aspect of family life. As such, the parents' relationships with professional health care providers become a special part of the experience with illness. This article is based on a research project that explored the views of parents of hospitalized chronically ill children. Through the in-depth interviews involved, it became evident that such parents often find themselves in complex, contradictory situations. They must retain a sense of the on-going care of the child, and they must relinquish the short-time care to professionals who are more accustomed to dealing with short-term, acute illnesses. The article also explores the use of "double bind" theory to show how the dilemma may be better understood and resolved. This is a new application of an old theory (Bateson, Jackson, Haley, and Weakland, 1956; 1963; Watzlawick, 1963). Double bind refers to a pattern of communication where individuals are caught in a system of sequenced messages that are contradictory and are associated with punishment. A "no-win" situation is created in that punishment is unavoidable. Bateson and colleagues (1956) originally proposed the theory as an explanatory device for the development of schizophrenia. The double bind has since been recognized as a facet of much normal human communication. Following years of empirical testing, the validity of the theory in relation to schizophrenia remains inconclusive; however, its clinical usefulness is clearly documented (Jones, 1977; Olson, 1972; Schuham, 1967; Watzlawick, 1963).