Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers
Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers
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DOI：
10.1097/ncc.0000000000000589
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发表时间：
2019-07-01
期刊：
影响因子：
2.6
通讯作者：
Haase, Joan E.
中科院分区：
文献类型：
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作者：
Hendricks-Ferguson, Verna L.;Haase, Joan E.
背景被诊断为癌症的儿童的父母可能会对癌症治疗决定感到后悔，并对从孩子的提供者那里获得的信息的清晰度感到不满。目的本研究的目的是描述父母对接受一个由医生和注册护士组成的跨专业团队的早期姑息护理和临终(PC/EOL)沟通干预的看法，该沟通干预的标题是“沟通计划：早期到生命终点干预”(Complete)。方法对10名家长在接受完全干预后进行半结构式访谈。完整的干预包括诊断后不久提供的3次会议和随后的2次癌症治疗评估。完整课程的重点是在诊断时和孩子的提供者进行肿瘤反应评估后的早期PC/EOL护理讨论。结果结果包括两个主题类别：(1)完全培养现实的希望和有意义的对话，由父母作为二元体与医疗服务提供者联系；(2)完全的好处帮助父母做出明智的决定。此外，还提出了完善完善的建议。结论在儿童癌症治疗的前6个月，完整的干预提供了一种独特的机制，促进了父母和跨专业团队之间关于PC/EOL选择的早期讨论。未来的研究需要使用随机的临床控制组设计来评估完整的大样本父母。
Background Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. Objective The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers. Methods Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers. Results Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE. Conclusion The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents.