Center for Applied Ethics, Education Development Center, Department of Anesthesiology, Children's Hospital Boston, Harvard Medical School, Boston, MA, USA.
Pediatr Crit Care Med. 2012 Nov;13(6):e350-6. doi: 10.1097/PCC.0b013e31825b5607.
The death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy.
Retrospective, qualitative study.
Two pediatric intensive care units located in children's hospitals within academic medical centers in the northeastern United States.
Parents of 18 children who died in the pediatric intensive care unit.
Semistructured telephone interviews, digitally recorded and transcribed.
Many of the factors deemed important by the parents related to their capacity to be a "good parent" to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one's child.
Parents' ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.
儿科重症监护病房（PICU）中儿童的死亡，或许是父母所能经历的最具毁灭性和挑战性的事件之一。本文探讨了在儿科重症监护病房死亡的儿童的父母如何理解自己的角色，并讨论了对临床护理和政策的影响。
回顾性、定性研究。
位于美国东北部学术医疗中心的两所儿童医院的儿科重症监护病房。
18 名在儿科重症监护病房死亡的儿童的父母。
半结构化电话访谈，数字记录并转录。
父母认为重要的许多因素与他们在孩子入住儿科重症监护病房期间作为“好父母”的能力有关。具体来说，父母试图通过三个领域来表达和维护他们的父母身份：1）给予爱、安慰和关怀；2）为家庭创造安全和隐私；3）对孩子的遭遇负责。
父母能够履行其作为儿科重症监护病房中死亡儿童的父母的基本职责，这影响了他们对体验质量的看法。儿科重症监护病房的临床护理和政策可以而且应该支持和保护这些特征，使父母感到，尽管结果不佳，但他们已经尽了最大努力为孩子。
