被疾病帶著跑——裘馨氏肌肉萎縮症兒童母親的生活經驗敘說

Racing With Illness: The Life Experiences of Mothers of Children With Duchenne Muscular Dystrophy

背景：瞭解裘馨氏肌肉萎縮症兒童（裘馨兒）母親的生活經驗是以家庭為中心照護理念的護理人員極需關注的議題，然而此議題卻鮮少被探究，因此有進行此方面研究的需要。
目的：透過母親的自身敘說以深入了解其照顧裘馨兒的生活經驗。
方法：採現象學研究法，自「社團法人中華民國肌萎縮症病友協會」南區會員名冊，以立意取樣進行收案。與11位願意參與本研究且無表達障礙，能以國或台語溝通的裘馨兒母親，經由一對一的深度訪談以獲取她們的生活經驗，並運用Colaizzi（1978）分析法進行資料分析。
結果：資料分析呈現出裘馨兒母親的生活充滿著被疾病帶著跑的經驗。母親被疾病帶著跑的生活經驗涵蓋四個主題：「時空的喪失」、「身心的受創」、「關係的損害」與「經濟的失衡」。
結論：本研究結果對母親在照顧裘馨兒時的生活經驗本質有深入的瞭解，藉此能提供政府機關、醫療機構、教育單位及支持團體進行聯合照護的參考，使裘馨兒母親的生活能得到更多的支持與協助，進而讓裘馨兒也能得到更好的照顧。

Background: Understanding the life experiences of mothers of children with Duchenne Muscular Dystrophy (DMD) is very important for nurses focused on providing family care. The present study provides valuable insight into this issue, as few studies on this important topic have been done previously. Purpose: The objective of this study was to explore thoroughly the life experiences of mothers taking care of DMD children from their own perspectives. Methods: This study used a phenomenological approach. A purposive sample of 11 mothers of DMD children was recruited from the Taiwan Muscular Dystrophy Association (Southern Chapter). All agreed to join this study and were able to speak either Taiwanese or Mandarin fluently. Data collected through one-to-one, in-depth interviews were analyzed using the Colaizzi (1978) phenomenological methodology. Results: Results showed that the life experiences of mothers of DMD children were typified by the theme, “racing with illness”. Four categories emerged from interview data, including: “loss of time and space”, “physical and psychological pain”, “damage to relationships”, and “financial difficulties”. Conclusions: Study findings may help us better understand the life experiences of mothers of children with DMD and may serve as an important reference with regard to how best to coordinate government, medical, education and other support organizations to provide such mothers with greater support and assistance and DMD children with better care.