Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
Department of Psychology, School of Social Sciences, University of Crete, Rethymnon, Greece.
Disabil Rehabil. 2022 Dec;44(25):7877-7890. doi: 10.1080/09638288.2021.2002436. Epub 2021 Nov 16.
Research on breaking bad news (BBN) in healthcare has mostly focused on the doctor-patient interaction during a single consultation. However, it has been increasingly recognised that BBN is a wider process that also involves other healthcare professionals. This qualitative study explored non-medical healthcare professionals' involvement in BBN to newly diagnosed patients with motor neurodegenerative conditions in the UK.
19 healthcare professionals working with people with motor neurone disease, multiple sclerosis, Parkinson's disease or Huntington's disease took part in individual, semi-structured interviews which were analysed using thematic analysis.
Four themes were constructed: dealing with the diagnostic aftermath, unpacking the diagnosis, breaking bad news as a balancing act and empowering patients to regain control over their health and lives. Participants reported being broadly involved in BBN by supporting patients with negative diagnostic experiences, re-iterating diagnostic information and helping patients understand the impact of their condition. The challenges of effectively breaking bad news and how these difficult conversations could help empower patients were also emphasised.
BBN was a critical and challenging aspect of healthcare professionals' clinical work with newly diagnosed patients with motor neurodegenerative conditions. Besides providing information, BBN was perceived as a way to educate patients, encourage them to make decisions and prepare for the future.Implications for rehabilitationBreaking bad news is a potentially under-recognised but significant aspect in the neurorehabilitation of neurodegenerative conditions.Listening to patients' stories about a long and occasionally unsatisfactory diagnostic journey and allowing them to express their frustration can be critical in regaining patients' trust and building a relationship with them.Newly diagnosed patients have not always received adequate information about their condition at diagnosis or they might have not understood or retained that information. It is, therefore, essential that patients' understanding of their condition is assessed, misconceptions are cleared and appropriate information about the nature and impact of the diagnosis is provided.Irrespective of the length of experience, breaking bad news was perceived as a multi-faceted, challenging, stressful and emotionally demanding task.Formal support and specialised training on breaking the bad news that addresses the incurable, unpredictable and progressive nature of motor neurodegenerative conditions could help professionals with this challenging task.
医疗保健领域中关于不良消息告知(BBN)的研究大多集中在医患单次咨询过程中的互动。然而,人们越来越认识到,BBN 是一个更广泛的过程,也涉及其他医疗保健专业人员。本定性研究探讨了英国非医疗保健专业人员在向新诊断出患有运动神经退行性疾病的患者告知不良消息方面的参与情况。
19 名从事运动神经元疾病、多发性硬化症、帕金森病或亨廷顿病患者护理工作的医疗保健专业人员参加了个人半结构化访谈,访谈内容使用主题分析进行了分析。
构建了四个主题:应对诊断后果、剖析诊断、不良消息告知是一种平衡行为以及赋予患者重新控制其健康和生活的能力。参与者报告称,他们广泛参与不良消息告知,通过支持患者应对负面诊断体验、反复强调诊断信息以及帮助患者了解其病情的影响来提供支持。他们还强调了有效告知不良消息的挑战以及这些困难对话如何帮助赋予患者权力。
不良消息告知是医疗保健专业人员为新诊断出患有运动神经退行性疾病的患者提供临床服务的一个关键且具有挑战性的方面。除了提供信息外,不良消息告知还被视为教育患者、鼓励他们做出决策和为未来做准备的一种方式。
不良消息告知是神经退行性疾病神经康复中一个可能被低估但意义重大的方面。倾听患者关于漫长且有时令人不满意的诊断过程的故事,并让他们表达自己的挫折感,对于重新获得患者的信任和与他们建立关系至关重要。新诊断出的患者在诊断时可能没有得到关于其病情的充分信息,或者他们可能没有理解或记住这些信息。因此,评估患者对其病情的理解程度、消除误解以及提供关于诊断性质和影响的适当信息非常重要。
无论经验长短,不良消息告知都被视为一项多方面、具有挑战性、压力大且情感要求高的任务。
提供专门的不良消息告知培训和支持,以解决运动神经退行性疾病不可治愈、不可预测和进行性的性质,可以帮助专业人员应对这一具有挑战性的任务。