Meyer Elaine C, Ritholz Marilyn D, Burns Jeffrey P, Truog Robert D
Medical Surgical Intensive Care Unit, Children's Hospital Boston, Boston, MA, USA.
Pediatrics. 2006 Mar;117(3):649-57. doi: 10.1542/peds.2005-0144.
Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective.
This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication.
Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith.
Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
尽管人们认识到濒死儿童及其家庭有独特的姑息治疗需求，但针对家长观点以改善临终关怀及沟通质量的实证研究却很少。本研究的目的是从家长的角度确定并描述临终关怀及沟通的优先事项和建议。
这是一项定性研究，基于马萨诸塞州波士顿3家儿科重症监护病房（PICU）中家长对匿名自填问卷上开放式问题的回答。56名孩子在撤除生命支持后于PICU死亡的家长参与了本研究。我们衡量了家长确定的临终关怀及沟通的优先事项。
家长确定了儿科临终关怀的6个优先事项，包括诚实和完整的信息、随时能联系到工作人员、沟通与护理协调、工作人员的情感表达与支持、维护亲子关系的完整性以及信仰。
家长的优先事项和建议为改善儿科临终临床实践和研究提供了简单而有力的指导。
