Eaton Nicola
Centre for Child and Adolescent Health, University of the West of England, Bristol, UK.
J Clin Nurs. 2008 Dec;17(23):3196-204. doi: 10.1111/j.1365-2702.2008.02630.x.
To describe the experiences of families, whose children have life-limiting and life-threatening conditions and who have complex healthcare needs, of receiving respite care at home or in a hospice.
Respite provision is an extremely important service in assisting families to cope with the extra stresses and problems of coping with children with complex healthcare needs. There are different issues when the venue is home or a hospice.
Semi-structured interviews were carried out with families of children with complex healthcare needs, receiving respite care at home or in a hospice.
A convenience sample of 11 families was interviewed using an interview schedule, exploring their experiences of the service and their views on the service.
The areas of concern identified as significant to all the families were referral to respite service, service organisation, communication, relinquishing control to respite carers and satisfaction with service.
Within the provision of respite care, there needs to be more overt referral systems and criteria, negotiation of appropriate roles, continuity of care, regular assessment of need and acknowledgement of the difficulty, which parents have in relinquishing control to respite carers.
High-quality respite care for families involves more than just organising a respite session. Healthcare professionals organising and providing care could manage a service more effectively, if taking the above issues into consideration.
描述那些孩子患有危及生命和严重威胁生命的疾病且有复杂医疗需求的家庭，在家中或临终关怀机构接受临时护理的经历。
临时护理服务在帮助家庭应对照顾有复杂医疗需求孩子所带来的额外压力和问题方面极为重要。当护理地点是家中或临终关怀机构时，会存在不同的问题。
对那些孩子有复杂医疗需求且在家中或临终关怀机构接受临时护理的家庭进行半结构化访谈。
采用访谈提纲对11个家庭进行便利抽样访谈，探讨他们对该服务的体验以及对服务的看法。
确定对所有家庭都很重要的关注领域包括转介至临时护理服务、服务组织、沟通、将控制权交给临时护理人员以及对服务的满意度。
在提供临时护理时，需要有更公开的转介系统和标准、协商合适的角色、护理的连续性、定期评估需求以及认识到父母将控制权交给临时护理人员所面临的困难。
为家庭提供高质量的临时护理不仅仅是安排一次临时护理时段。如果医疗专业人员在组织和提供护理时考虑到上述问题，就能更有效地管理服务。
