McConigley R, Kristjanson L J, Aoun S M, Oldham L, Currow D C, O'Connor M, Holloway K
School of Nursing and Midwifery, Curtin Health Innovation Research Institute, Curtin University, Perth, Western Australia, Australia.
BMJ Support Palliat Care. 2014 Mar;4(1):38-42. doi: 10.1136/bmjspcare-2013-000489. Epub 2013 Jul 13.
There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals.
Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes.
A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members).
Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.
关于可能需要为运动神经元病（MND）患者提供护理的卫生专业人员的经验和教育需求，尤其是在疾病后期的相关信息有限。本研究的目的是确定这些卫生专业人员的经验以及教育需求。
对31名在为MND患者提供姑息治疗方面有一定经验的卫生专业人员进行了访谈和焦点小组讨论。采用主题内容分析法来确定共同主题。
出现了一个关键主题“领先一步”，它描述了卫生专业人员确定的核心能力，即帮助个体在疾病和生活方式变化即将出现之前进行规划和准备。还出现了两个子主题：MND专业知识和定制沟通。MND专业知识描述了对疾病以及特定个体所患疾病的必要理解，以使卫生专业人员能够为MND患者规划、提供建议、给予支持并预测其需求。定制沟通是指能够针对参与护理的各类人员（患者、家属、医疗团队成员）敏感且有效地调整护理信息。
对MND患者的护理需要有关该疾病的最新专业知识以及处理复杂情况和变化的熟练沟通能力。为护理提供者提供及时且有针对性的教育以及专业的MND支持对于提供定制化和响应式护理至关重要，并且已经制定了一个广泛可用的教育计划来满足这些需求。
