Data_Sheet_1_Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.pdf

Background and AimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

背景与目标：临终关怀（EoL）的讨论对于重症青少年和年轻成年人（AYAs）而言可能颇具挑战。研究人员旨在探究完成《表达我的选择》（VMC）——一项基于研究的前瞻性照护计划（ACP）指南——是否能够增进与家庭成员、朋友或医疗保健提供者（HCPs）之间的沟通，并评估与VMC共享者的体验。方法：对与AYAs分享完成VMC的家人、朋友或HCPs进行了结构化访谈，以评估他们对ACP讨论的看法、关系变化、对话质量以及讨论是否促使了护理方式的变化。开放式回答接受了主题分析。结果：完成VMC一个月后，65.1%的AYAs与家庭成员分享了VMC的完成情况，22.6%与朋友分享，8.9%与HCPs分享。在受访者样本中，家人（47%）和朋友（33%）报告称，他们与AYAs的关系发生了积极的改变。参与者对体验的描述可分为五个主题：正面体验（47%）、困难体验（44%）、感激有指南促进讨论（35%）、提供缓解（21%）和产生担忧/焦虑（9%）。只有1位HCP指出护理方式有所改变。家人（76%）、朋友（67%）和HCP（50%）均认为，如果没有完成VMC，AYAs不太可能讨论EoL的偏好。结论：《表达我的选择》有望提升AYAs与其家庭成员和朋友之间关于ACP的沟通，尽管与HCPs的沟通频率较低。参与者报告称，在讨论VMC后，他们与AYAs的关系发生了积极的改变，并描述这次对话是有益的，即便在情感上颇具挑战。