Living with progressive childhood illness: parental management of neuromuscular disease.

This investigation is an exploratory study of parental management of progressive childhood neuromuscular disease. It focuses on parents for their significance as the primary managers of their children's diseases. The study, through its fieldwork component for the collection of data, utilizes participant observation. The researcher lived with each of six families for four days and nights to learn of the main concerns of parents with children who have Duchenne muscular dystrophy and Werdnig-Hoffmann disease, and the ways in which the parents manage these concerns. General patterns of positive parental management are defined and are followed by descriptions, in functional terms, of some of the strategies that parents employ to carry out these patterns.