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首页> 外文期刊>Journal of Palliative Medicine >Hope in Palliative Care: From Narcissism to Self-Transcendence in Amyotrophic Lateral Sclerosis
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Hope in Palliative Care: From Narcissism to Self-Transcendence in Amyotrophic Lateral Sclerosis

机译：姑息治疗的希望：从自恋到肌萎缩性侧索硬化症的自我超越

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Introduction: The concept of hope in palliative care is an important and neglected area of research. Amyotrophic lateral sclerosis (ALS), a progressive degenerative motor neuron disease, offers an excellent opportunity to study this construct as the illness is virtually always fatal. Our research explored the meaning of hope in individuals with ALS.nnPatients and methods: Sixteen patients (13 males and 3 females; mean age, 54) were interviewed during routine clinic visits to the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center, San Francisco. The Forced Vital Capacity (FVC) Scale and the ALS Functional Rating Scale-Revised (ALSFRS-R) and a Hope Scale were administered. Themes of hope were identified and categorized.nnResults: Hope categories included: (1) hope for a cure, (2) social support, (3) search for information, (4) spiritual beliefs, (5) limiting the impact, (6) adapting to changing capacities, (7) living in the moment, and (8) self-transcendence. The relationship between hope and the FVC value and individual as well as overall ALSFRS-R ratings were examined, and none were significant.nnDiscussion: Individuals varied in their capacity to cope with their illness unrelated to their physical ability. Themes ranged from a primary focus on the self to one of heightened concern for others, on continuum from narcissism to altruism. Respondents cited using a number of categories of hope (mean = 5).nnConclusion: Patients draw upon a variety of mechanisms to sustain hope when facing chronic disease, including hope for a cure, support from others, seeking information, spiritual beliefs, limiting the impact, adapting to changing capacities, living in the moment, and transcending the self. The palliative care team can play an important role by promoting discussions regarding hopefulness and its many forms in individuals with ALS
机译：简介：姑息治疗中的希望概念是重要而被忽略的研究领域。肌萎缩性侧索硬化症（ALS）是一种进行性退行性运动神经元疾病，为研究这种结构提供了极好的机会，因为该疾病实际上总是致命的。我们的研究探讨了对ALS患者的希望的意义。nn患者和方法：在加利福尼亚太平洋医学中心的福布斯·诺里斯MDA / ALS研究中心进行例行临床访问期间，对16名患者（男13例，女3例；平均年龄54岁）进行了访谈。 ， 旧金山。进行强制肺活量（FVC）量表和ALS功能评定量表修订版（ALSFRS-R）和希望量表。确定并分类了希望的主题。nn结果：希望的类别包括：（1）希望得到治愈；（2）社会支持；（3）搜索信息；（4）精神信仰；（5）限制影响；（6） ）以适应不断变化的能力，（7）活在当下，（8）自我超越。希望与FVC值之间的关系以及个人以及ALSFRS-R总体评分之间的关​​系得到了检验，但均无显着意义。nn讨论：个体应对疾病的能力各不相同，与他们的身体能力无关。主题的范围从主要着眼于自我到对他人的高度关注，从自恋到利他主义的连续体。受访者使用了许多类别的希望（平均数= 5）。nn结论：患者在面对慢性疾病时会利用多种机制维持希望，包括希望治愈，寻求他人支持，寻求信息，精神信仰，限制希望。影响，适应变化的能力，活在当下并超越自我。姑息治疗团队可以通过促进有关ALS患者的希望及其多种形式的讨论来发挥重要作用

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