Hackett Julia, Beresford Bryony
Social Policy Research Unit and Martin House Research Centre, University of York, York, UK.
Palliat Med. 2021 Mar;35(3):603-610. doi: 10.1177/0269216320984335. Epub 2021 Jan 11.
The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body.
To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices.
An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices ( = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis.
41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.
儿童死亡令人极度痛苦。关于父母与已故孩子相处的益处和价值的证据现已融入常规做法，并被视为一种丧亲支持干预措施。英国儿童临终关怀机构有使用“降温设施”（冷卧室、冷却毯/床垫）的传统，通过减缓身体恶化来延长这段时间。
描述：（1）英国儿童临终关怀机构中降温设施的类型和使用情况、关于其使用的政策和做法以及随时间的任何变化。（2）护理主任对降温设施目的的看法以及临终关怀机构特定做法的基本原理。
采用解释性混合方法设计，包括两个阶段：对英国儿童临终关怀机构的护理主任进行横断面调查（n = 52），随后对部分受访者进行半结构化电话访谈。调查数据采用描述性统计分析，访谈数据采用定向内容分析。
52家临终关怀机构中有41家完成了调查，13名护理主任接受了访谈。所有临终关怀机构都有降温设施。一些机构提供在家使用便携式降温设施，但使用率似乎较低。临终关怀机构在护理管理方法和使用时长方面存在差异。关于父母是否应观察身体恶化的观点影响了后者。护理主任认为这些设施为家庭提供了说“再见”和处理丧亲之痛的时间。报告了工作人员面临的挑战。
