Developing services to support parents caring for a technology-dependent child at home

Background. A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. Aims. To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods. In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. Results. Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/ home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. Conclusions. Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families. © 2004 Blackwell Publishing Ltd.