Division, duplication and neglect: patterns of care for children with chronic disorders.

The care of forty-four children with chronic arthropathies (usually juvenile rheumatoid arthritis) was studied by parental interview. The goal was to determine parents' perceptions of how management responsibilities are shared between primary physicians and specialists. Responses to questions about each of nine specific areas of care, ranging from diagnosis and treatment of the chronic disorder to the care of minor, acute illnesses, enabled the investigators to determine which physician had assumed major responsibility for each area. The results suggest a pattern whereby basic care is either divided or duplicated, but with many of the supportive aspects of care neglected in a high proportion of families. A comparison of these results with those of a similar study of children with meningomyelocele provides support for the view that such patterns are typical of the care of most children with chronic disorders.