Division of Communication Sciences and Disorders, School of Health and Rehabilitation Sciences, University of Cape Town, Observatory, Cape Town 7925, South Africa.
Dysphagia. 2009 Sep;24(3):322-32. doi: 10.1007/s00455-009-9210-7. Epub 2009 Mar 4.
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.
本现象学研究旨在描述 7 位为有进食和/或吞咽困难的孩子提供居家护理的母亲的亲身经历。研究采用半结构式访谈收集数据，并按照 Colaizzi 的归纳还原分析法进行分析。结果表明，母亲们的经历可以理解为两个持续的旅程，它们并非相互排斥。第一个旅程是“解构：失落和无力的旅程”，包含三个本质：（1）失去母亲的梦想，（2）一切都变了：生活在边缘，（3）无力：从母亲变成旁观者。第二个旅程是“重构：穿越破碎”，包含以下三个本质：（4）放下梦想，珍视现实，（5）自我赋权：成为推动者，（6）促进旅程，以及（7）持续的旅程：协商平衡。作为一个患有慢性进食和/或吞咽困难的孩子的母亲，这种现象仍然是一种变革性的体验，在这个过程中，个人成长伴随着慢性悲伤以及周期性的斗争和失落的重现。这一现象呼吁医疗保健专业人员在提供以家庭为中心的干预措施时，纳入母亲的意义和需求。
