Caring for chronically ill children at home: factors that influence parents' coping.

Abstract

This study examined 29 parents' perceptions of the stressfulness of copying with their chronically ill child's home care. The parents were primarily responsible for care regimes that represented a continuous range of caregiving burden. Data were obtained using the Clinician's Overall Burden Index (COBI) (Stein & Jessop, 1982), the Coping Health Inventory for Parents (CHIP) (McCubbin & Patterson, 1981), visual analogue scales, and home interviews with parents. Parents described many dimensions of caregiving burden. Increased caregiving burden was associated with greater stressfulness and the use of fewer helpful coping strategies. Three clusters of coping strategies were most helpful: (a) using family support, (b) maintaining a positive outlook, and (c) ensuring that care was performed. The need for a reconceptualization of caregiving burden is discussed.