儿科重症监护病房中患有危及生命疾病的儿童的父母在临终关怀决策方面的体验：一项定性访谈研究。
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.
机构信息
Warwick Medical School, University of Warwick, Coventry, West Midlands, UK.
Paediatric Intensive Care Unit, Birmingham Women's and Children's NHS Foundation Trust, Birmingham, Birmingham, UK.
出版信息
BMJ Open. 2019 May 9;9(5):e028548. doi: 10.1136/bmjopen-2018-028548.
OBJECTIVES
To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).
DESIGN
An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.
SETTING
A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.
PARTICIPANTS
17 parents of 11 children who had died in the PICU.
RESULTS
Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU.
CONCLUSIONS AND IMPLICATIONS
The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.
目的
深入了解在儿科重症监护病房（PICU）经历过生命有限或危及生命的儿童临终关怀决策的丧亲父母的经验和看法。
设计
对过去 12 个月内在 PICU 死亡的患有生命有限或危及生命疾病的儿童的父母进行了深入的定性访谈研究。对访谈记录进行了主题分析。
地点
英国西米德兰兹郡一家大型国民保健制度（NHS）三级儿童医院的 PICU。
参与者
17 名在 PICU 死亡的 11 名儿童的父母。
结果
确定了与临终关怀决策相关的五个相互关联的主题：（1）父母具有重要的知识和经验，影响决策过程。（2）与医疗保健专业人员建立信任关系是支持父母做出临终决策的关键。（3）与医疗保健专业人员的言语和非言语沟通会影响家庭体验。（4）参与临终关怀决策可能会令人情绪崩溃，但如果父母“接受”，则成为可能。（5）家庭认为在 PICU 接受临终关怀对他们的孩子有益。
结论和意义
儿童的死亡对所有相关人员来说都是一种强烈的情感体验。这项研究增加了有关父母临终关怀决策经验的有限证据基础，并提供了具有国际相关性的发现，特别是与护理地点和临终关怀讨论的引入有关。父母的专业知识和以往经验非常重要，应该得到认可。临终关怀决策是一个复杂而微妙的过程；每个家庭的信息需求和偏好都是个体的，需要由参与他们护理的专业人员理解。
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