罕見疾病皮肌炎病患之護理經驗

本文旨在描述照護一位女性皮肌炎病患之經驗，患者因吞嚥困難及近端肢體乏力住院而初次確診罹患罕見疾病皮肌炎。照護期間自2010年8月3日至9月1日，筆者藉由直接照顧、觀察及會談，採用Gordon十一項功能性健康型態等方式進行評估，確立個案有吞嚥困難、活動無耐力、身體心像紊亂之健康問題。照護過程中，經由主動關懷，與個案建立良好護病關係；教導吞嚥技巧及鼻胃管灌食注意事項，滿足進食之生理需求；與個案及家屬共同訂立適合之復健活動，藉以提升身體活動功能；製作衛教單張提供疾病相關訊息，並藉由親友鼓勵與支持增進自信，改善疾病造成的身體心像改變；並教導家屬日常生活照護技能，俾使個案順利出院。皮肌炎是一種罕見慢性疾病，病患需終身與病共存，為維持患者生活品質，除了急性期醫療照護外，居家照護技能益顯重要，希望藉此護理經驗，能提供護理人員照護此類個案之參考。

關鍵字

罕見慢性疾病；皮肌炎；護理

並列摘要

This article describes a nursing experience of taking care of a female patient with dermatomyositis. The patient, admitted for dysphagia and weakness of proximal extremities, was preliminarily diagnosed with dermatomyositis. During the nursing period from August 3 to September 1, 2010, the authors collected information through direct patient care, observation, and interview. Gordon's 11 functional health patterns were used to assess the patient's nursing needs. The three identified health problems included difficulty of swallowing, intolerance of activity, and disturbance of body image. Through proactive caring and the establishment of a good patient-nurse relationship, the patient was taught about adequate swallowing techniques and nasogastric tube feeding. Physical therapy was planned with the patient and her family to promote the patient's physical function. The patient was provided with an educational pamphlet regarding dermatomyositis-related information. With the family's encouragement and support, the patient's confidence increased and perceptions of body image secondary to disease improved. The family was taught about the skills for daily life activity after discharge from the hospital. Dermatomyositis is a rare chronic disease, so the patient has to live with it for the rest of her lifetime. Besides medical care required during the acute stage, skills for home care are vital. This nursing experience can serve as a reference for other nurses who take care of patients with the same diagnosis.

並列關鍵字

rare chronic disease ； dermatomyositis ； nursing

國際替代計量

罕見疾病皮肌炎病患之護理經驗

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