The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties
The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties
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DOI：
10.1007/s00455-009-9210-7
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发表时间：
2009-09-01
期刊：
影响因子：
2.6
通讯作者：
Singh, Shajila
中科院分区：
文献类型：
--
作者：
Hewetson, Ronelle;Singh, Shajila
本现象学研究的目的是描述七位母亲的生活经历，她们为有进食和/或吞咽困难的孩子提供家庭护理。使用半结构化访谈收集数据，并根据Colaizzi的归纳还原法进行分析。结果表明，母亲的经历可以被理解为两个不相互排斥的连续旅程。第一，“解构：一个失去和失去权力的旅程”包括三个本质：（1）失去母亲的梦想，（2）一切都改变了：生活在边缘，（3）失去权力：从母亲到母亲。第二个旅程是“重建：度过破碎”，其本质是（4）放弃梦想，重视真实的，（5）自我赋权：成为推动者，（6）促进旅程，（7）继续旅程：谈判平衡。作为患有慢性喂养和/或吞咽困难的孩子的母亲的现象仍然是一种变革性的经历，在这种经历中，个人的成长沿着着慢性悲伤和周期性的斗争和失落的死灰复燃。影响要求医疗保健专业人员纳入产妇的意义和需要，提供适当的家庭为重点的干预。
The purpose of this phenomenologic study was to describe the lived experiences of seven mothers who were providing home-based care for their children with feeding and/or swallowing difficulties. Data were collected using semistructured interviews and were analysed as per Colaizzi's method of inductive reduction. Results suggest that the mothers' experiences can be understood as two continuing journeys that were not mutually exclusive. The first, "Deconstruction: A journey of loss and disempowerment," comprised three essences: (1) losing the mother dream, (2) everything changes: living life on the margins, and (3) disempowered: from mother to onlooker. The second journey was "Reconstruction: Getting through the brokenness" with the essences of (4) letting go of the dream and valuing the real, (5) self-empowered: becoming the enabler, (6) facilitating the journey, and (7) the continuing journey: negotiating balance. The phenomenon of being the mother of a child with chronic feeding and/or swallowing difficulties continued to be a transformative experience in which personal growth emerged along with chronic sorrow and periodic resurgence of struggle and loss. Implications call for healthcare professionals to incorporate maternal meanings and needs in providing appropriate family-focused intervention.