Study of care management arrangements for dying children

Abstract

An interview study of ‘key’ providers of care for children over one year of age with life-limiting, incurable disorders is described. The study was conducted in 12 District Health Authorities (DHAs) across four selected Regional Health Authorities.The data were drawn from 92 semi-structured transcribed interviews with care professionals, such as social workers, community nurses and paediatricians. Not all DHAs had written local strategies to guide care management. A wide diversity of provision, together with care management arrangements, was described for a number of diseases. Several care professionals were found to contribute to the care of these children and their families in a variety of ways. The need for more respite care facilities and bereavement services was highlighted, although most DHAs had plans for the future development of services. Equity of access to treatment and support services to a common standard is a major issue which needs addressing, as is the relative merit of specialist versus generalist service provision.