• respite care;
  • children with complex health care needs;
  • children’s community nursing;
  • home-based support;
  • evaluation

Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation

Aims. The aim of this article is to present some of the results of a qualitative evaluation of a United Kingdom (UK) nurse-led, home-based, respite service for the families of children under the age of five with complex health care needs.

Background. Advances in neonatal medical and nursing care have contributed to a growth in the number of children who survive low birth weight, birth trauma, and various congenital anomalies. Many of these children are likely to have long-term care needs which will require innovative nursing responses. Of particular importance is the need for parental respite, given the added demands of caring for very ill children at home.

Methods. A parent-centred, follow-up evaluation, using in-depth qualitative interviews with parents in 18 families consecutively referred to the Children’s Outreach Service between April and December 1997.

Findings. This evaluation reveals the sometimes mixed reactions of parents to this innovative service, and the equivocal evidence about its role in contributing to family well-being. We discuss, from the perspective of parents using the service, some of the dilemmas and problems in the provision of home-based respite support to this client group. In particular, we explore the diverse ways in which families talk about their need for respite support and point to the need for flexibility in this kind of service provision if these support needs are to be met.

Conclusion. We conclude by discussing the practice implications of our evaluation for those planning similar services.