Bedoya Sima Z, Fry Abigail, Gordon Mallorie L, Lyon Maureen E, Thompkins Jessica, Fasciano Karen, Malinowski Paige, Heath Corey, Sender Leonard, Zabokrtsky Keri, Pao Maryland, Wiener Lori
Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States.
Children's National Hospital, Washington, DC, United States.
Front Psychol. 2022 Jun 8;13:871042. doi: 10.3389/fpsyg.2022.871042. eCollection 2022.
End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing (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.
Family, 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.
One-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.
VMC 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.
对于重症青少年和青年成年人（AYA）而言，临终讨论可能颇具难度。研究人员旨在确定完成一份基于研究的预先护理计划（ACP）指南《我的人生选择》（VMC）是否能增进与家人、朋友或医疗保健提供者（HCP）的沟通，并评估分享VMC的人的体验。
对AYA与之分享已完成的VMC的家人、朋友或HCP进行结构化访谈，以评估他们对ACP讨论的看法、他们关系的变化、对话质量，以及该讨论是否促使护理发生改变。对开放式回答进行主题分析。
完成VMC一个月后，65.1%的AYA与家庭成员分享了完成情况，22.6%与朋友分享，8.9%与HCP分享。在受访者样本中，家人（47%）和朋友（33%）报告称与AYA的关系有积极变化。参与者对该体验的描述分为五个主题：积极体验（47%）、困难体验（44%）、赞赏有助于讨论的指南（35%）、缓解了压力（21%）以及引发担忧/焦虑（9%）。只有1名HCP指出治疗有变化。家人（76%）、朋友（67%）和HCP（50%）认为，如果没有完成VMC，AYA不会讨论临终偏好。
VMC有潜力增强AYA与其家人和朋友之间关于ACP的沟通，不过与HCP沟通的频率较低。参与者报告称，在讨论VMC后，他们与AYA的关系有积极变化，并且表示即使对话在情感上也很困难，但仍认为对话是有益的。
