神经退行性疾病教育计划

T. Oki
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引用次数: 1

摘要

由于我们无法阻止神经退行性疾病的发展,我们必须将神经退行性疾病视为危及生命的疾病和姑息治疗的对象。神经退行性疾病患者及其家属通常对自己的疾病知之甚少,往往无法自行选择治疗和护理方案。在将姑息治疗的原则应用于患者及其家属之前,我们必须向他们提供有关其疾病的适当信息。但是,对神经退行性疾病患者及其家属的教育干预很少,也很少有研究调查他们的知识。此外,除了一项之外,其他都是针对痴呆症患者的教育干预。所有关于神经退行性疾病教育干预的报道都表明,简单的教育干预不能减轻家庭负担,一份关于锥体外系疾病和小脑退行性疾病的报道也表明,简单的教育干预不能改变疾病自然退化的过程,并可能对患者产生抑郁反应。为了减轻家庭的负担我们必须在身体上支持他们的家庭,为了鼓励病人接受他们的疾病我们必须控制他们的抑郁并且用缓和治疗的原则来对待他们。
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Educational Programs for Neurodegenerative Diseases
As we cannot stop disease progression of neurodegenerative diseases, we have to consider neurodegenerative diseases as life-threatening illnesses and the objects of palliative care. Neurodegenerative disease patients and their families usually do not have much information about their diseases and often cannot choose their treatment and care options on their own. Before applying the principles of palliative care to the patients and their families, we have to give appropriate information about their diseases to them. But there were few educational interventions in neurodegenerative disease patients and their families and also few studies investigating the knowledge they had. Moreover all but one was the educational interventions for demented patients. All reports about the educational interventions in neurodegenerative diseases showed that the simple educational interventions might not reduce the burdens on the families, and one report for extrapyramidal diseases and cerebellar degenerations moreover showed that the simple educational interventions could not change the courses of natural degradation of the diseases and might produce depressive reaction, to the patients. In order to reduce the burdens of the families we have to support the families with physically, and in order to encourage the patients to accept their diseases we have to control their depressions and approach to them with the principles of palliative care.
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