Preliminary Study: Taiwanese Mothers' Experiences of Children with Sensory Processing Disorder

初步探討台灣母親照顧感覺統合失調孩童之經驗

邱恩琦(En-Chi Chiu)

《The Journal of Nursing Research》 21卷3期 (2013/09) Pp. 219-224

https://doi.org/10.1097/JNR.0b013e3182a0afd4

摘要

背景：對於養育失能孩童，不同的文化背景和家長經驗，會影響父母的教養方式和態度。以家庭為中心之服務模式下，家長照顧失能孩童的經驗應列入考量，特別是母親（為孩童的主要照顧者）。目的：探討台灣母親對感覺統合失調孩童的經驗。方法：使用質性民族誌研究設計，透過半結構訪談方法，收集台灣母親照顧感覺統合失調孩童的經驗，分析並統整其口述資料以歸納出主題。結果：共三位台灣母親參與訪談，於訪談結果中分析出三項主題：（一）失能與文化共享之間的關係；（二）日常生活中的挑戰與期望；（三）接受專業服務之機會。三位台灣母親表達出被責備教養技巧不足及對其孩童失能而感到羞恥之壓力，這些壓力源自老師、朋友、其他家庭成員不瞭解感覺統合失調孩童之不適切行為。台灣母親對孩童應表現之行為和態度有所期待，當其孩童於日常事務中碰到困難時，此情況造成母親和孩童雙方之壓力。這些台灣母親需要立即及長期的醫療服務，但現實狀況為醫院之職能治療師人手不足，因此有特殊需求之孩童必須輪流以獲得治療服務。結論：台灣母親所體會之壓力源自於自身、孩童與他人。醫療人員應提供以家庭為中心之服務模式，以符合母親和孩童的需求。再者應推廣感覺統合失調及其治療方式的概念，以增進社會大眾對這些孩童之接受度。

關鍵字

感覺統合失調 ； 以家庭為中心之服務模式 ； 台灣母親 ； 民族誌研究

並列摘要

Background: Different cultural backgrounds and parental experiences influence parenting styles and approaches to raising children with disabilities. Family-centered care should consider parental, especially main caregivers, experiences with their disabled children. In Taiwan, in most of homes, mothers are the main caregivers.Purpose: The purpose of this study was to explore Taiwanese mothers' experiences with their children who have sensory processing disorder.Methods: This study used a qualitative ethnographic design and semistructured interview format. Transcripts were analyzed and synthesized into themes.Results: Three mothers were interviewed. The following three themes emerged: (a) relationships within the shared worlds of disability and culture, (b) daily life challenges and expectations, and (c) opportunity to receive professional services. These Taiwanese mothers expressed that they experienced stress from being blamed for insufficient skills and from the shame of their children's disabilities that reflected lack of teacher, friend, and other family members' understanding of the cause of their children's inappropriate behaviors. Their children experienced difficulties performing daily activities, which resulted in stresses on both the mother and her child. The interviewed mothers needed to receive timely, long-term services from healthcare professionals. However, hospitals are inadequately staffed with occupational therapists, which delays care for children with special needs.Conclusion: Taiwanese mothers experience stresses from themselves, their child, and others. Healthcare professionals should apply a family-centered service approach to fulfill the needs of mothers and their disabled children. Moreover, healthcare professionals should promote greater awareness of sensory processing disorder symptoms and interventions to increase public awareness and acceptance of these children.

並列關鍵字

sensory processing disorder ； family-centered service approach ； Taiwanese mothers ； ethnographic research

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