一位肌萎縮性脊髓側索硬化症病人之照護經驗

肌萎縮性脊髓側索硬化症是一種罕見神經退化疾病，俗稱漸凍人症，疾病初期常因肌肉萎縮無力，導致吞嚥困難及身體活動功能障礙，後期甚至會出現呼吸困難引發吸入性肺炎，或是全身肌無力長期臥床需依賴家屬照護等問題，造成病人心理及社會各方面的衝擊而產生無望感，本文為描述運用羅氏適應模式於一位67歲女性肌萎縮性脊髓側索硬化症，原誤診為帕金森氏症，後因疾病快速進展造成嗆咳及走路跌倒，入院檢查卻確診為漸凍人症，病人除身體不適外，面對突如其來的衝擊，也使病人對身體機能恢復失去信心及未來感到茫然，而產生無望感。於照護期間2019年3月3日至2019年3月19日，筆者藉由觀察、會談、傾聽技巧進行主、客觀資料收集，運用羅氏適應模式評估，瞭解病人之壓力與需要，確立病人有吞嚥困難、身體活動功能障礙及無望感等護理問題。過程中運用溝通技巧建立信任護病關係，鼓勵病人表達對壓力的感受，提供疾病相關資訊，走出診斷為肌萎縮性脊髓側索硬化症的心理陰霾，協助病人調整飲食型態改善嗆咳，並可參與製作溝通卡提升溝通效率與自控性，積極邀請家屬參與照護協助被動關節活動，透過重要親友互動及交流幫助克服無望感，最終度過此危機，重新找到人生的自我價值。

關鍵字

肌萎縮性脊髓側索硬化症；吞嚥困難；無望感

並列摘要

Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease. In the early, muscle atrophy and weakness lead to dysphagia and physical dysfunction, and aspiration pneumonia, and long-term bed rest need to dependent on family. As a result, the patient's psychological and social impacts and a sense of hopelessness. This article describes the use of Roy's adaptation model in a 67-year-old woman with ALS. Due to the rapid progress of the disease, causing choking and falling, She was diagnosed withALS. Not only is the body uncomfortable, but the face of the sudden shock also makes the patient lose confidence in the recovery of body functions and feel at a loss in the future, resulting in a sense of hopelessness. The nursing period is from March 3, 2019 to March 19, 2019. Collect subjective and objective data through observation, interview, and listening skills. Use Roy's adaptation model to understand the pressure and needs of patients Identify health problems such as dysphagia, physical dysfunction, and hopelessness. Encourage expressing feelings about stress, provide disease-related information, and get out of the psychological haze. Prevent choking, and make communication cards to improve communication efficiency and self-control. Invite family members to participate in care, overcome hopelessness through interactive communication, and rediscover self-worth in life.