照護一位肌萎縮性側索硬化症病人之護理經驗

Nursing Experience of a Patient with Amyotrophic Lateral Sclerosis

本篇個案報告為照護一位肌萎縮性側索硬化症病患之照護經驗，個案因疾病導致呼吸衰竭，在置入氣管內管後因無法移除而接受氣切造口術，並面對返家後仍需長期使用呼吸器，在個案意識清楚卻須面對長期管路留置及日常生活無法自理問題，產生逃避、負面心態，家屬則因面臨照護上責任及須學習管路照護、呼吸器使用問題而出現緊張、焦慮等情緒反應。筆者於護理期間2019年9月28日至10月8日以四大層面評估個案問題，藉由直接照護、觀察、筆談、查閱病歷等方式收集資料，發現個案有低效性呼吸型態、無望感及照顧者角色緊張等護理問題，透過個別性護理措施，設計病患合適運動、增加親屬間陪伴、傾聽並鼓勵家屬及個案說出擔憂問題，以正向態度接受疾病變化；提供衛教工具，以回覆示教強化照護能力及因應技巧，減輕家庭身心壓力，提升生活品質。透過此次照護經驗建議未來增設簡易圖卡、字卡，以利臨床護病溝通；制訂住院銜接居家呼吸器查檢表與衛教影片、單張，幫助家屬能有效學習，並提供未來類似個案照護之參考。

This report is the nursing experience of caring for a patient with amyotrophic lateral sclerosis. The patient suffered from respiratory failure due to the disease. After inserting the endotracheal tube, because the tube could not be removed, he received a tracheostomy and still needed to use a respirator for a long time after returning home. The patient has negative attitude while facing the long-term indwelling of the tube and the inability to take care of herself in daily life. Meanwhile, the family members have emotional reactions such as nervousness and anxiety while facing caring responsibility and learning how to take care of the tube and use respirator.
During the nursing period from September 28th to October 8th, 2019, the author assessed the problems of the case on four major levels. By collecting data through direct care, observation, written interviews, and medical history review, the case was found to have inefficient breathing patterns and hopelessness, and the caregivers were tense. Through individual nursing measures, designing appropriate exercises for patient, increasing companionship between family members, listening to and encouraging family members and patient to express their concerns and accept changes in the disease with a positive attitude, providing health education tools and teaching back to strengthen the care ability, those reduce the physical and mental pressure of the family, and improve the quality of life. Based on this nursing experience, it is recommended to add simple picture cards and word cards in the future to facilitate the communication between clinical nurses and patients. To develop a hospital connection with home respirator checklist and health education videos and leaflets, it helps family members learn effectively and provide future care for similar cases.