Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with Motor Neuron(e) Disease: clinicians’ and family members’ perspectives
{"title":"Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with Motor Neuron(e) Disease: clinicians’ and family members’ perspectives","authors":"C. Chapman, Sara Bayes, Moira Sim","doi":"10.1177/20534345211010132","DOIUrl":null,"url":null,"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.","PeriodicalId":43751,"journal":{"name":"International Journal of Care Coordination","volume":"24 1","pages":"96 - 106"},"PeriodicalIF":0.8000,"publicationDate":"2021-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/20534345211010132","citationCount":"3","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Care Coordination","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/20534345211010132","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"NURSING","Score":null,"Total":0}
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.
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.