Sheetz M Joan, Bowman Mary-Ann Sontag
Rainbow Kids Palliative Care Program, Primary Children's Medical Center, Salt Lake City, UT, USA.
Am J Hosp Palliat Care. 2013 May;30(3):291-6. doi: 10.1177/1049909112449376. Epub 2012 Jun 13.
Reports of family satisfaction with pediatric palliative care have been limited. This knowledge is critical for both program development and furthering understanding of needs. The purpose of this study was to assess parents' perceptions about whether a pediatric palliative care program was providing key elements of pediatric palliative care as described in the literature and to assess parental satisfaction with services. Data were collected from 65 parents, using a tool developed for the project, whose children died while receiving services from Rainbow Kids Palliative Care, a program of Primary Children's Medical Center, and the Department of Pediatrics, University of Utah, Salt Lake City, Utah. Respondents reported that the Rainbow Kids team had provided emotional support, helped with decision making and communication, and that their children's symptoms were managed. Furthermore, parent respondents expressed high levels of satisfaction with services from the Rainbow Kids team.
关于家庭对儿科姑息治疗满意度的报告有限。这些信息对于项目开发和深入了解需求都至关重要。本研究的目的是评估家长对于儿科姑息治疗项目是否提供了文献中所述的儿科姑息治疗关键要素的看法,并评估家长对服务的满意度。数据收集自65位家长,使用的是为该项目开发的工具,这些家长的孩子在接受盐湖城犹他大学儿科系Primary Children's Medical Center的彩虹儿童姑息治疗项目服务期间去世。受访者表示,彩虹儿童团队提供了情感支持,协助进行决策和沟通,并且他们孩子的症状得到了控制。此外,家长受访者对彩虹儿童团队的服务表达了高度满意。