Allowing Adolescents and Young Adults to Plan Their End-of-Life Care
Allowing Adolescents and Young Adults to Plan Their End-of-Life Care
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DOI：
10.1542/peds.2012-0663
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发表时间：
2012-11-01
期刊：
影响因子：
8
通讯作者：
Pao, Maryland
中科院分区：
文献类型：
--
作者：
Wiener, Lori;Zadeh, Sima;Pao, Maryland
目的：本研究的目的是评估和比较有用性，有益性，和压力与审查以前改编的先进的护理计划指南，我的想法，我的愿望，我的声音，与广泛使用的成人文件五个愿望的青少年和年轻人（AYAs）生活在一个严重的疾病。方法：52名参加者（16-28岁）患有转移性或复发性癌症或HIV感染（在出生时或生命早期获得的）随机呈现了我的想法，我的愿望，我的声音和五个愿望，并要求根据几个因素对25个项目进行排名，包括他们完成每个陈述的可能性。参与者对建议的内容、设计、格式和风格的变化提出了意见，并最终制定了一份新的文件。患有危及生命的疾病的AYA希望能够选择和记录（1）他们想要和不想要的医疗方式，（2）他们希望如何被照顾，（3）他们的家人和朋友知道的信息，结论：AYA关于什么应该包括在预先护理计划指南中的观点被纳入了一份新的文件，“表达我的选择”，该文件为年轻人，家庭和提供者提供了一个机会，通过允许一个机会来分享自己的声音，减少死亡过程中的沉默。我们就如何将此工具纳入护理提供指导。儿科2012;130：897-905
OBJECTIVE: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness.METHODS: Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document.RESULTS: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.CONCLUSIONS: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care. Pediatrics 2012;130:897-905