Aoun Samar M, Breen Lauren J, Oliver David, Henderson Robert D, Edis Robert, O'Connor Margaret, Howting Denise, Harris Rodney, Birks Carol
School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.
School of Psychology and Speech Pathology, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.
J Neurol Sci. 2017 Jan 15;372:144-151. doi: 10.1016/j.jns.2016.11.043. Epub 2016 Nov 20.
Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.
家庭照顾者在肌萎缩侧索硬化症（MND）患者的护理和支持中发挥着核心作用，从诊断到疾病进展以及MND带来的多重损失，他们都面临着挑战，但他们的支持需求往往被忽视。本研究旨在调查家庭照顾者在诊断时的经历以及他们对得知诊断消息的满意度。澳大利亚所有MND协会（2014年）协助开展了一项匿名邮寄调查，190名家庭照顾者完成了问卷。问题集中在传达坏消息的SPIKES协议上。三分之二的家庭照顾者将他们的神经科医生的技能评为高于平均水平，并对诊断的传达感到满意，这体现在咨询时间明显更长、神经科医生热情且关怀备至、对他们收到的信息数量和内容以及相关支持感到满意，以及有后续支持计划。相反，那些将神经科医生的技能评为低于平均水平的人则谈到了他们遇到的困难以及沟通不畅所带来的长期情感压力。该研究强调了先前的研究，即神经科医生在传达诊断方面可能需要教育和培训，这应该将家庭照顾者作为MND护理中的重要成员纳入其中。
