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从失去亲人的家属那里了解临终关怀和丧亲之痛。

Insights from Bereaved Family Members about End-of-Life Care and Bereavement.

机构信息

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Department of Psychiatry, Boston Children's Hospital and Brigham and Women's Hospital, and Harvard Medical School, Boston, Massachusetts, USA.

出版信息

J Palliat Med. 2020 Aug;23(8):1030-1037. doi: 10.1089/jpm.2019.0467. Epub 2020 Feb 10.

Abstract

Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individuals. We examined family members' experiences about the clinical care their loved one received at EOL and the perceived effect this care had on their subsequent bereavement. Survey. One hundred forty bereaved family members from our cancer institute completed a bereavement survey. Of these family members, 67% were female, 66% were 60 years of age or older, and 81% were widowed. We analyzed open-ended responses using NVivo 11 Plus© that asked bereaved family members about the ways the clinical (oncology) team was helpful or not in dealing with their loss. The findings showed that compassionate care, competency, receiving honest facts, and outreach after the death favorably influenced the bereavement experience. Conversely, impersonal contact, lack of contact, including lack of caregiver support, and lack of information about EOL and death were identified as actions taken by the clinical team that were unhelpful in dealing with their loss. The feedback from bereaved family members highlights two areas that could benefit from quality improvement efforts: (1) communication skills that focus on enhancing compassionate connection, including conveying empathy, and providing reassurance and guidance to patients and their families and (2) communication skills that focus on delivering information about prognosis and the EOL period in an honest and direct way.

摘要

丧亲关怀计划为医疗机构提供了一个途径,使其能够从家属那里获得关于患者在疾病和生命终末期期间的体验的反馈,从而可以用来改善患者护理和丧亲者的护理。我们调查了家属对亲人在生命终末期所接受的临床护理的体验,以及他们认为这种护理对他们随后的丧亲之痛的影响。调查。我们癌症研究所的 140 名丧亲家属完成了一份丧亲调查。这些家属中,67%为女性,66%年龄在 60 岁或以上,81%为丧偶。我们使用 NVivo 11 Plus© 分析了开放式回答,询问丧亲家属临床(肿瘤学)团队在处理他们的损失方面有哪些帮助或不帮助的方式。研究结果表明,富有同情心的护理、能力、诚实的事实以及死亡后的联系对丧亲体验有积极影响。相反,冷漠的接触、缺乏接触,包括缺乏护理人员的支持,以及缺乏关于生命终末期和死亡的信息,被认为是临床团队在处理他们的损失方面不恰当的行为。丧亲家属的反馈突出了两个可能受益于质量改进努力的领域:(1)沟通技巧,重点是增强富有同情心的联系,包括传达同理心,并为患者及其家属提供安慰和指导;(2)沟通技巧,重点是以诚实和直接的方式提供关于预后和生命终末期的信息。

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