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首页> 美国卫生研究院文献>Frontiers in Neurology >Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention
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Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention

机译：缓解肌萎缩性侧索硬化症患者的心理困扰并改善其生活质量：短期心理治疗干预的适应

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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that is inevitably fatal. To be diagnosed with a terminal illness such as ALS deeply affects one’s personal existence and goes along with significant changes regarding the physical, emotional, and social domains of the patients’ life. ALS patients have to face a rapidly debilitating physical decline which restrains mobility and impairs all activities of daily living. This progressive loss of autonomy may lead to a sense of hopelessness and loss of quality of life, which in turn may even result in thoughts about physician-assisted suicide. Here, we would like to propose a psychotherapeutic manualized, individual, semi-structured intervention to relieve distress and promote psychological well-being in ALS patients. This short-term intervention was originally developed for advanced cancer patients. “Managing Cancer and Living Meaningfully (CALM)” focuses on the four dimensions: (i) symptom management and communication with healthcare providers, (ii) changes in self and relations with close others, (iii) spirituality, sense of meaning and purpose and (iv) thinking of the future, hope, and mortality. We suggest to supplement the concept by two additional dimensions which take into account specific issues of ALS patients: (v) communication skills, and (vi) emotional expression and control. This therapeutic concept named “ManagIng Burden in ALS and Living Meaningfully (mi-BALM)” may be a further treatment option to help improving quality of life of ALS patients.
机译：肌萎缩性侧索硬化症（ALS）是一种不可避免的致命性进行性神经退行性疾病。被诊断为患有ALS等绝症，会深深影响个人的生存，并伴随着患者生活中身体，情感和社会领域的重大变化。 ALS患者必须面对迅速衰弱的身体衰退，这会限制行动能力并损害日常生活的所有活动。这种逐渐丧失的自主权可能会导致绝望感和生活质量的丧失，进而甚至可能引发有关医生协助自杀的想法。在这里，我们想提出一种心理治疗性手动化，个体化，半结构化的干预措施，以缓解ALS患者的困扰并促进其心理健康。这种短期干预措施最初是为晚期癌症患者开发的。 “管理癌症和有意义地生活（CALM）”着重于四个方面：（i）症状管理和与医疗保健提供者的交流，（ii）自我的改变以及与亲密人的关系，（iii）灵性，意义和目的感以及（iv）考虑未来，希望和死亡率。我们建议通过两个额外的维度来补充该概念，这些维度应考虑ALS患者的具体问题：（v）沟通技巧，以及（vi）情绪表达和控制。这种名为“管理ALS和有意义地生活（mi-BALM）的负担”的治疗概念可能是进一步改善ALS患者生活质量的治疗选择。

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