Mash Elisabeth, Lloyd-Williams Mari
Academic Palliative and Supportive Care Studies Group, Division of Primary Care, School of Population, Community and Behavioural Sciences, Faculty of Medicine, University of Liverpool, Brownlow Hill, Liverpool, L69 3GB, UK.
Support Care Cancer. 2006 Dec;14(12):1169-72. doi: 10.1007/s00520-006-0123-9. Epub 2006 Nov 11.
One in 10,000 children die of a life-threatening condition annually, and in the UK, nearly forty hospices exist to provide care for children with life-threatening illnesses. This study was designed to explore what is offered within children's hospices and how they cared for the growing number of older children and adolescents who are living with life-limiting illness.
A questionnaire was sent to all of the children's hospices in the UK (n=40), as listed in the Hospice Information (2003) Hospice Information, Hospice Directory, 2003. A number of different areas were covered e.g. staffing, services offered, nature of care provided and, in relation to older children, their links with adult hospices.
Thirty-three of the 40 children's hospices returned the questionnaires--an 83% response rate. Care of adolescents with life-threatening illness was identified as an issue with more than 50% of the hospices stating that they had difficulty in liaison with adult hospices to offer support for adolescents.
This study highlights that there is consistency in the high level of care being provided to children up to the age of 18, but provision of care after this age is patchy and not always readily available.
每年每一万名儿童中就有一人死于危及生命的疾病,在英国,有近40家临终关怀机构为患有危及生命疾病的儿童提供护理。本研究旨在探讨儿童临终关怀机构提供了哪些服务,以及它们如何照顾越来越多患有危及生命疾病的大龄儿童和青少年。
向《临终关怀信息(2003)》临终关怀信息、临终关怀名录(2003年)中列出的英国所有儿童临终关怀机构(n = 40)发送了一份调查问卷。涵盖了多个不同领域,例如人员配备、提供的服务、所提供护理的性质,以及就大龄儿童而言,它们与成人临终关怀机构的联系。
40家儿童临终关怀机构中有33家回复了问卷,回复率为83%。超过50%的临终关怀机构认为,照顾患有危及生命疾病的青少年是一个问题,称它们在与成人临终关怀机构联络以为青少年提供支持方面存在困难。
本研究强调,为18岁以下儿童提供的高水平护理具有一致性,但这个年龄之后的护理提供情况参差不齐,且并非总是容易获得。