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决定是否使用左心室辅助装置——一项主题分析,探讨影响新加坡晚期心力衰竭患者决策过程的因素

Deciding to Live (or Not) With a Left Ventricular Assist Device-a Thematic Analysis Exploring Factors Influencing the Decision-Making Process in Advanced Heart Failure Patients in Singapore.

作者信息

Neo Shirlyn Hui Shan, Ku Jasmine Si Min, Tan Jasmine Yun Ting, Yoon Sungwon

机构信息

Division of Supportive and Palliative Care, 68751National Cancer Centre, Singapore.

Department of Medical Social Services, 68753National Heart Centre, Singapore.

出版信息

Am J Hosp Palliat Care. 2023 Jan;40(1):27-33. doi: 10.1177/10499091221085275. Epub 2022 Apr 19.

Abstract

It is often difficult for patients with advanced heart failure (HF) to decide whether to live with a left ventricular assist device (LVAD) or not. Little is known about their decisional needs prior to LVAD implantation and if these needs were met in the Asian cultural setting. We aimed to explore the influences, concerns, and needs surrounding the decision-making process of the LVAD implantation among multi-ethnic Asian patients with HF. Semi-structured interviews with HF patients and caregivers were conducted, based upon the grounded theory approach. Participants were purposively recruited from the inpatient and outpatient setting of the National Heart Centre Singapore. A total of 31 patients and 11 caregivers participated. Mindsets that shaped decision-making ranged from "having no choice," "being reflective," "taking a gamble," and "fighting on." Instead of making a sole decision, many patients reported that decisions were shared with the family or medical team. Current LVAD patients who acted as patient ambassadors were also strong influences. Spiritual support was pivotal to decision-making for some participants. Goals influencing decision-making including protecting the family and life prolongation improving quality of life. Values held close included sanctity of life, trusting in a higher power, believing in pre-destination or karma, and preserving family harmony. Participants had concerns about cost, employment, and health outcomes. Asian LVAD patients and caregivers had culturally specific mindsets, goals, and values and concerns around decision-making. Our findings have implications for the design of interventions and supportive care models.

摘要

对于晚期心力衰竭(HF)患者而言,决定是否使用左心室辅助装置(LVAD)往往并非易事。在LVAD植入前,人们对他们的决策需求知之甚少,也不清楚在亚洲文化背景下这些需求是否能得到满足。我们旨在探究多民族亚洲HF患者在LVAD植入决策过程中的影响因素、担忧及需求。基于扎根理论方法,我们对HF患者及其照护者进行了半结构化访谈。参与者是从新加坡国立心脏中心的住院部和门诊部有目的地招募而来的。共有31名患者和11名照护者参与。影响决策的心态包括“别无选择”“深思熟虑”“冒险一搏”和“继续抗争”。许多患者表示,决策并非由自己独自做出,而是与家人或医疗团队共同商议。担任患者大使的现有的LVAD患者也产生了很大影响。精神支持对一些参与者的决策至关重要。影响决策的目标包括保护家人、延长生命和改善生活质量。他们所秉持的价值观包括生命的神圣性、相信更高的力量、相信命运或因果报应以及维护家庭和睦。参与者还对费用、就业和健康结果表示担忧。亚洲LVAD患者及其照护者在决策方面有着特定文化背景下的心态、目标、价值观及担忧。我们的研究结果对干预措施和支持性护理模式的设计具有启示意义。

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