Olsen R, Maslin-Prothero P
Research Associate, Nuffield Community Care Studies Unit, University of Leicester, Leicester, UK.
J Adv Nurs. 2001 Jun;34(5):603-10. doi: 10.1046/j.1365-2648.2001.01789.x.
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.
一项评估的证据
目标。本文旨在呈现对一项由英国护士主导、基于家庭的临时照料服务进行定性评估的部分结果，该服务面向五岁以下有复杂医疗需求儿童的家庭。
背景。新生儿医疗和护理的进步促使出生体重低、出生创伤及各种先天性异常的存活儿童数量增加。这些儿童中有许多可能有长期护理需求，这需要创新的护理应对措施。鉴于在家照顾重病儿童的额外需求，家长临时照料的需求尤为重要。
方法。以家长为中心进行随访评估，于1997年4月至12月对连续转介至儿童外展服务机构的18个家庭的家长进行深入定性访谈。
结果。该评估揭示了家长对这项创新服务有时复杂的反应，以及关于其对家庭福祉作用的模糊证据。我们从使用该服务的家长角度讨论了为这一客户群体提供家庭临时照料支持时的一些困境和问题。特别是，我们探讨了家庭表达其对临时照料支持需求的多种方式，并指出若要满足这些支持需求，此类服务提供需具备灵活性。
结论。我们通过讨论评估结果对计划开展类似服务者的实践意义来得出结论。
