重症肌無力症病人生病歷程探討

The Exploration of Illness Process of Patients with Myasthenia Gravis

重症肌無力症是一個慢性且複雜的自體免疫疾病。三分之一病人併有失能問題，讓病人無法回到原來的生活。為了解重症肌無力症病人的生病歷程，及其所遭遇的困境與因應方式，本研究為探索性質性研究，訪談20 位罹病2 年以上的重症肌無力症病人，探討重症肌無力症病人生病歷程主觀經驗。研究過程由研究者與病人採一對一面對面深度訪談，訪談資料轉為逐字稿後採內容分析法進行分析。本研究共收案20 位重症肌無力症病人。年齡28 至72 歲，平均病齡13.5 ± 7.3 年。訪談資料歸納出三個階段、五個主題，疾病晦暗不明階段-開啟變調的人生階段；疾病治療階段-陷入囹圄般的困境階段，與掙扎於人際關係的糾結；疾病適應階段-設法穩定帶病的生活，以及建立新的自我價值階段。總結，重症肌無力症病人從初次症狀出現即進入漫長的生病歷程，過程中除了面對症狀造成身體不適，及其對生活的影響，還要掙扎於人際間的糾結。經過時間的磨練後，除了自己努力學習與疾病共處外，家人、朋友與病友支持團體扮演著重要的支持角色。醫護人員不僅提供醫療照護，也要肩負起身、心、社會與靈性層面的觀察與照護，適時提供轉介到病友支持團體，以利於病人獲得無縫醫療照護。

Myasthenia gravis (MG) is a chronic, complex, autoimmune disorder. One-third of MG patients were complicated by severe disabilities and unable to return to ordinary life. To recognize MG patients’ illness experiences including their difficulties and coping strategies, we enrolled 20 patients, aged 28 to 72 years, using an explorative qualitative approach. The mean duration of illness was 13.5±7.3 years. Data were derived by content analysis and categorized into three stages with five themes. The first stage was the obscure stagebegging of transposition. The second was the treatment stage - falling into the limbo, and struggling tangle in interpersonal. And the last stage was the adaptation stage - finding ways to stabilize their lives with illness, and reestablishing self-worth. Living with MG is the patients’ unwavering responsibility. Their family and friends play important roles in supporting as well. Moreover, the peer support groups of MG could share their experiences one another and help provide information they need. The importance of support groups should be valued. In addition, the health care providers ought to provide proper observation and care of physical, psychological, social and spiritual dimensions. If necessary, we should refer patient to support groups timely in order to facilitate the seamless care.