Adolescent End of Life Preferences and Congruence With Their Parents' Preferences: Results of a Survey of Adolescents With Cancer
Adolescent End of Life Preferences and Congruence With Their Parents' Preferences: Results of a Survey of Adolescents With Cancer
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DOI：
10.1002/pbc.25358
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发表时间：
2015-04-01
影响因子：
3.2
通讯作者：
Lyon, Maureen E.
中科院分区：
文献类型：
--
作者：
Jacobs, Shana;Perez, Jennie;Lyon, Maureen E.
背景很少有人知道如何以及家庭成员准确地代表青少年时，代表他们的EOL决定。本研究报告的调查给予青少年癌症和他们的父母作为一个更大的研究促进先进的护理讨论的一部分，以及一项调查的结果为health care providers.ProcedureTrained主持人管理调查口头青少年和家庭的干预臂FAMILY中心先进的护理计划（ACP）的青少年癌症（FACE-TC）研究。此外，事后调查被送往肿瘤providers.ResultsSeventeen青少年/家庭二人组完成了这项调查。75%的青少年认为尽早讨论死亡决定是合适的，只有12%的青少年不愿意讨论死亡。如果死了，最好呆在家里。青少年和他们的代理人之间有相当多的一致性，但在自然死亡的重要性方面，在家里死亡，想知道我是否要死的重要性方面，他们的一致性较低。在供应商中，83%的人认为他们的病人参与这项研究是有帮助的病人和78%的人认为这是有帮助的，他们作为provider.ConclusionsAdolescents癌症是舒适的讨论EOL，大多数人更喜欢谈论EOL的问题之前，他们面临着EOL。青少年和他们的代理人之间有实质性的协议领域，但青少年的EOL愿望的重要方面并不为他们的家人所知，这加强了引出个人偏好和参与二元关系的重要性，因此父母可以理解他们孩子的愿望。儿科血液癌症2015;62：710-714。(c)2014 Wiley Periodicals，Inc.
BackgroundLittle is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.ProcedureTrained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers.ResultsSeventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and wanting to know if I were dying. Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers.ConclusionsAdolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes. Pediatr Blood Cancer 2015;62:710-714. (c) 2014 Wiley Periodicals, Inc.