裘馨兒母親的轉渡經驗

Transitional Experiences among Mothers Becoming the Caregivers of Children with Duchenne Muscular Dystrophy

研究目的：藉由裘馨氏肌肉萎縮症兒童（裘馨兒）母親的自身敘說來深入了解其成為照顧者的轉渡經驗。研究方法：研究設計採現象學研究法，以立意取樣選取11位「社團法人中華民國肌萎縮症病友協會」之裘馨兒母親。經由一對一的深度訪談以獲取她們的主觀經驗，訪談資料運用Colaizzi（1978）分析法進行訪談資料分析。研究結果：結果呈現出裘馨兒母親的轉渡經驗包含「汩汩苦流中，給自己力量前行」及「滿滿母愛下，竭盡所能給予」。研究結論：本篇研究結果有助於對裘馨兒母親轉渡經驗的初步認識，並能提供政府機關、健康專業機構、教育單位及支持團體聯合照護的參考，讓裘馨兒母親的轉渡經驗能從擺盪中更趨向穩定。

Purpose: This study explored the transitional experiences of mothers as they became caregivers of children with Duchenne Muscular Dystrophy (DMD). The focus of the study was to understand their perspectives. Methods: One-on-one interviews were conducted with 11 mothers of DMD children identified through the Taiwan Muscular Dystrophy Association. Data were analyzed using the Colaizzi phenomenological method. Results: The analysis revealed 2 main themes: “in a stream of bitterness, finding the strength to move forward”, and “being in touch with a mother’s abundant love to provide the best for a DMD child”. Conclusions: The findings shed light on the transitional experiences of mothers of DMD kids and may serve as an important reference for government, healthcare professionals, educational organizations, and other non-governmental organization support teams to improve their services to this group.