Richards Claire A, Starks Helene, O'Connor M Rebecca, Doorenbos Ardith Z
Box 357266, Seattle, WA 98195-7266, Department of Biobehavioral Nursing and Health Systems, School of Nursing, University of Washington, Seattle, 919-998-9022.
School of Public Health, Department of Bioethics and Humanities, University of Washington, Seattle.
J Hosp Palliat Nurs. 2017 Jun;19(3):238-246. doi: 10.1097/NJH.0000000000000335.
This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child. Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles from parents as care provider to care recipient. The PICU setting may place clinicians in a double bind trying to both engage families and protect them from distress. Asking families of critically ill children about their preferences for participation across these domains may improve clinician-family relationships.
本文报告了对定性文献进行系统检索和主题分析的结果，以确定与以家庭为中心的护理、支持父母角色并改善儿科重症监护病房（PICU）患者及其家庭治疗结果的行为和沟通技巧相关的关键问题。确定了五个主题：1）信息共享；2）倾听父母的声音；3）为父母或与父母共同决策；4）协商角色；5）个性化沟通。这些主题凸显了父母希望参与的方式与他们认为临床医生让他们参与孩子护理的方式之间的几个差距。在从护理提供者到护理接受者的一系列父母角色中，父母在信息共享、决策和权力分享领域的参与偏好各不相同。PICU的环境可能使临床医生陷入两难境地，既要让家庭参与进来，又要保护他们免受痛苦。询问重症患儿家庭在这些领域的参与偏好可能会改善临床医生与家庭的关系。
