Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with Motor Neuron(e) Disease: clinicians’ and family members’ perspectives

IF 0.8 Q4 NURSING
C. Chapman, Sara Bayes, Moira Sim
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引用次数: 3

Abstract

Introduction International guidelines recommend that health care clinicians communicate with people with MND and their family members about non-invasive ventilation (NIV) and percutaneous gastrostomy tube (PEG) prior to or at the onset of respiratory symptoms. This study sought to discover the degree to which these recommendations are followed in practice. Methods Interpretive Description methodology was employed. Nineteen clinicians experienced in caring for people with MND, six relatives of recently deceased people with MND and one person with MND participated in semi-structured in-depth interviews. Clinicians’ accounts of NIV and PEG related communications were compared to family member participants’ recollections of their own discussions with clinicians. Data were analysed thematically. Results Six major themes emerged that together capture the factors that impact practitioner-patient-family communications about NIV and PEG. Some clinicians were unaware of MND guidelines particularly communicating the burdens or possible withdrawal of NIV or found them challenging to implement. Consequently, family participants reported that they and their relatives with MND found clinicians’ communication on these topics inadequate. This led to them ‘topping up’ their knowledge from less authoritative sources, predominantly the internet. Discussion Clinicians’ lack of awareness of the international guidelines and discomfort about discussing the benefits and burdens of NIV and PEGs means some people with MND and their families may be unprepared for the consequences of using and ceasing NIV.
运动神经元(e)疾病成人无创通气启动和退出的沟通:临床医生和家庭成员的观点
国际指南建议卫生保健临床医生在呼吸道症状出现之前或出现时与MND患者及其家庭成员就无创通气(NIV)和经皮胃造口管(PEG)进行沟通。这项研究试图发现这些建议在实践中被遵循的程度。方法采用解释性描述法。19名临床医生具有照顾MND患者的经验,6名最近死亡的MND患者的亲属和1名MND患者参加了半结构化的深度访谈。临床医生对NIV和PEG相关通信的描述与家庭成员参与者对他们自己与临床医生讨论的回忆进行了比较。数据按主题进行分析。结果出现了六个主要主题,共同捕捉了影响医生-患者-家庭关于NIV和PEG沟通的因素。一些临床医生不知道MND指南,特别是传达了NIV的负担或可能的撤销,或者发现它们难以实施。因此,家庭参与者报告说,他们和他们患有MND的亲属发现临床医生在这些主题上的沟通不足。这导致他们从不那么权威的来源(主要是互联网)“补充”自己的知识。临床医生缺乏对国际指南的认识,不愿意讨论无NIV和peg的好处和负担,这意味着一些MND患者及其家人可能对使用和停止使用无NIV的后果没有准备。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.10
自引率
14.30%
发文量
15
期刊介绍: The International Journal of Care Coordination (formerly published as the International Journal of Care Pathways) provides an international forum for the latest scientific research in care coordination. The Journal publishes peer-reviewed original articles which describe basic research to a multidisciplinary field as well as other broader approaches and strategies hypothesized to improve care coordination. The Journal offers insightful overviews and reflections on innovation, underlying issues, and thought provoking opinion pieces in related fields. Articles from multidisciplinary fields are welcomed from leading health care academics and policy-makers. Published articles types include original research, reviews, guidelines papers, book reviews, and news items.
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