Do children with non-malignant life-threatening conditions receive effective palliative care? A pragmatic evaluation of a local service.

Abstract

A service established in October 1998 aimed to provide nursing and psychological support in the community to families with children who have non-malignant life-threatening illnesses. The purpose of this study was to conduct a pragmatic evaluation of the service. A before and after study design was used. It incorporated an administered questionnaire survey of carers of children at the time of referral and again after six months, a postal survey of health professionals and an audit of nursing and psychology records. Twenty-nine families were recruited. The children had a wide range of needs. Prior to the service, nearly half were rated by their main carer as experiencing considerable distress. Perceived problems were as frequently due to emotional or practical care needs as due directly to their physical illness. Information and nursing care needs appeared to be improved and distress rating was slightly reduced after the involvement of the service. However, problems with equipment and respite needs were not improved. In general, families were satisfied with central aspects of the service. The service appears to meet most of the expectations of both families and health professionals. However, recommendations include improvement of communication, the provision of a 24-h service and of respite care.