O'Connor Margaret, Aoun Samar M, Breen Lauren J
Nursing & Midwifery, Monash University, Melbourne, Victoria, Australia.
Curtin University, Perth, WA, Australia.
Health Soc Care Community. 2018 May;26(3):e415-e421. doi: 10.1111/hsc.12541. Epub 2018 Jan 22.
While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated. Anonymous postal surveys were sent to people with MND in Australia and their family carers respectively. The perceived ability/skills of neurologists was assessed using a five-point scale from excellent to poor. Attributes of communication of bad news was measured by the SPIKES protocol. Each survey question invited further written responses. Eight hundred and sixty-four questionnaires were posted to people with MND and their family carers, with assistance from MND associations. One hundred and ninety-six family carers submitted responses, of which 171 (88%) were patient-carer dyads. Analyses were conducted on 190 family carers. Five themes emerged from reading and re-reading written responses: frustrations with the diagnosis; giving information; family carer observations of the neurologist; the setting; and what would have made the diagnosis easier? The delivery of the diagnosis is a pivotal event in the MND trajectory. Satisfaction for patients and their family carers is related to the neurologists showing empathy and responding appropriately to their emotions, exhibiting knowledge and providing longer consultations. Neurologists may benefit from education and training in communication skills to adequately respond to patients' and families' emotions and development of best practice protocols.
虽然家庭成员照顾绝症患者的经历已有详尽记录，但对于神经疾病患者，尤其是运动神经元病（MND）患者的照顾者的需求却知之甚少。本文描述了一项针对澳大利亚大量MND患者家庭照顾者的调查所获得的定性数据，以确定他们在接受诊断时的经历。该研究的目的是描述MND患者家庭照顾者接受诊断的经历，以便为改进诊断告知方式提供信息。分别向澳大利亚的MND患者及其家庭照顾者发送了匿名邮政调查问卷。使用从优秀到差的五点量表评估神经科医生的感知能力/技能。采用SPIKES协议衡量坏消息传达的属性。每个调查问题都邀请了进一步的书面回复。在MND协会的协助下，向MND患者及其家庭照顾者邮寄了864份问卷。196名家庭照顾者提交了回复，其中171对（88%）是患者-照顾者二元组。对190名家庭照顾者进行了分析。通过反复阅读书面回复，出现了五个主题：对诊断的挫败感；提供信息；家庭照顾者对神经科医生的观察；诊断环境；以及怎样能让诊断过程更轻松？诊断的告知是MND病程中的一个关键事件。患者及其家庭照顾者的满意度与神经科医生表现出同理心并对他们的情绪做出适当反应、展现知识以及提供更长时间的咨询有关。神经科医生可能会从沟通技巧的教育和培训中受益，以便充分应对患者及其家人的情绪，并制定最佳实践方案。
