Lee Shu-Li, Kao Pao-Lien, Tien Yueh-Hsuan, Hsu Min-Tao
School of Nursing, Kaohsiung Medical University, ROC.
Hu Li Za Zhi. 2010 Feb;57(1):45-54.
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.
The objective of this study was to explore thoroughly the life experiences of mothers taking care of DMD children from their own perspectives.
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 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".
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.
对于专注于提供家庭护理的护士而言，了解杜氏肌营养不良症（DMD）患儿母亲的生活经历非常重要。本研究为这一问题提供了有价值的见解，因为此前针对这一重要主题的研究较少。
本研究的目的是从照顾DMD患儿的母亲自身角度深入探究她们的生活经历。
本研究采用现象学方法。从台湾肌肉萎缩症协会（南部分会）招募了11名DMD患儿的母亲作为目的抽样样本。她们均同意参与本研究，且能够流利地说台语或普通话。通过一对一深度访谈收集的数据采用科莱齐（1978）现象学方法进行分析。
结果显示，DMD患儿母亲的生活经历以“与疾病赛跑”这一主题为典型特征。访谈数据归纳出四个类别，包括：“时间和空间的丧失”“身心痛苦”“关系受损”以及“经济困难”。
研究结果可能有助于我们更好地理解DMD患儿母亲的生活经历，并且在如何最好地协调政府、医疗、教育及其他支持组织为这些母亲提供更多支持与援助以及为DMD患儿提供更好护理方面，可作为重要参考。
