Palliative Care for its Spiritual Pain of individuals living with neurological intractable illnesses

本研究的目的是确定患有进行性神经肌肉疾病的个人的心理状态，并探讨如何为他们提供姑息治疗。本研究共分四个部分，目的是获得以下方面的数据：1）肌萎缩侧索硬化症患者在症状发作时、诊断前阶段和诊断后立即阶段的患病经历; 2）患有各种MND的患者十年以上的患病经历; 3）医疗咨询诊所的咨询需求; 4）家庭护理人员的心理困扰，结果发现患者的心理困扰有6个领域和12种类型。这个领域<Somatic symptoms and difficulties in their daily lives>似乎会导致其他心理困扰领域。根据患者心理困扰的6个领域，提取出10个类别，作为患者心理支持的反映。结果表明，患者的心理状态随其痛苦程度和心理支持程度的不同而变化。了解患者复杂多样的心理状况，使其获得安全感和支持是非常重要的。护士及其他医护人员应先进行心理评估，然后提供必要的信息，并以适合每个病人的方式进行咨询。护士应该首先尝试直接的方法来解决躯体症状和日常生活中的困难。护士应与患者及家属共同寻找心理支持，将心理困扰转化为心理支持，作为姑息治疗的手段。

The purpose of this study was to identify the psychological state of individuals living with progressive neuromuscular illnesses and explore how to provide them with palliative care. There were four parts to the study, and they were performed to obtain data concerning : 1) the illness experience of individuals living with amyotrophic lateral sclerosis at the onset of symptoms, in the pre-diagnostic phase, and in the phase immediately after diagnosis ; 2) the illness experience of individuals living with various MNDs for more than ten years ; 3) counseling needs at the medical-counseling clinic ; and 4) the psychological distress of home care nurses.As a result, six domains and twelve categories of psychological distress were identified in the patients. The domain <Somatic symptoms and difficulties in their daily lives> seemed to lead to the rest of domains of psychological distresses. Ten categories corresponding to the six domains of their psychological distresses were extracted as reflecting to mental support of the patients. It became evident that the psychological state of the patients fluctuates with the severity of the distress and the degree of mental support that they feel.The findings in this study suggest the following :1. It is important to understand patients' complex and diverse psychological condition and make them feel secure and supported. Nurses and other health care providers should first perform psychological assessment and then offer necessary information and engage in counseling in a manner suitable for each patient.2. Nurses should first try direct approaches toward resolving somatic symptoms and difficulties in their own daily lives. Then nurses should work together with patients and their family to find mental support, and to transform psychological distress into mental support as means of palliative care.