Kirk S, Pritchard E
School of Nursing, Midwifery and Social Work, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester M13 9PL, UK.
Child Care Health Dev. 2012 Jan;38(1):32-40. doi: 10.1111/j.1365-2214.2011.01232.x. Epub 2011 Mar 28.
Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life-limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hospices.
The aim of the study was to investigate parents' and young people's perceptions of hospice support and identify how support could be improved. A mixed-method approach was used involving a postal survey of families and in-depth qualitative interviews with a purposively sampled subsample of parents and young people.
A total of 108 (49.8% response rate) questionnaires were returned and interviews were conducted with 12 parents and seven young people. Families were highly satisfied with the support provided in terms of quality of care; interpersonal qualities of the staff; the individualized, family-focused approach; accessibility of support and involvement in decision making. Young people valued the opportunity to meet with other young people and take part in different activities. For parents the provision of a break from caring was the main way in which they were supported although they felt they wanted more of this form of support. A consistent theme in relation to support for young people and siblings was the need to develop facilities, activities and bereavement support specifically for teenagers/young people.
Parents value a model of care that provides holistic, family-focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.
临终关怀机构是儿童姑息治疗服务的重要组成部分，患有危及生命疾病的儿童/年轻人数量不断增加，这意味着对这些机构的支持需求可能会上升。然而，缺乏已发表的研究来探讨家庭如何体验儿童临终关怀机构提供的支持。
该研究的目的是调查父母和年轻人对临终关怀机构支持的看法，并确定如何改进支持。采用了混合方法，包括对家庭进行邮寄调查，以及对有目的地抽取的父母和年轻人子样本进行深入的定性访谈。
共收回108份问卷（回复率为49.8%），并对12名父母和7名年轻人进行了访谈。家庭对所提供支持的护理质量、工作人员的人际品质、个性化的以家庭为中心的方法、支持的可及性以及参与决策方面高度满意。年轻人重视与其他年轻人见面并参加不同活动的机会。对父母来说，提供照料期间的休息是他们获得支持的主要方式，尽管他们觉得希望得到更多这种形式的支持。与对年轻人和兄弟姐妹的支持相关的一个一致主题是，需要专门为青少年/年轻人开发设施、活动和丧亲支持。
父母重视一种提供全面的、以家庭为中心的支持的护理模式，这种支持能响应个体需求，并促进控制和积极参与决策。现在的关键挑战是应对不断增加的需求和不断变化的用户群体。
