Supporting 'expert' parents--professional support and families caring for a child with complex health care needs in the community

Abstract

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents' and professionals' experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional 'support' that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles.