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護理研究 MEDLINEScopus

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篇名 唐氏症嬰幼兒父母認知真相後之調適過程
卷期 5:1
並列篇名 The Adaptation Process after Disclosure of Diagnosis in Parents of Children with Down Syndrome
作者 蔣欣欣喻永生
頁次 19-29
關鍵字 唐氏症認知真相父母調適歷程Down syndromeDisclosure of handicapParental coping processTSCIMEDLINEScopus
出刊日期 199702

中文摘要

本研究旨在瞭唐氏症嬰幼兒的父母親在認知患兒診斷及身體的先天性缺陷後,對此危機的調適過程。為能深入了解這些父母親的主觀經驗,故採用參與觀察的質性研究,主要以會談及觀察法訪談10位母親及6位父親,研究者根據收集的資料做內容比分析,結果發現家庭調適歷程可區分為三個階段:(1)震驚疑慮期,包括當頭被打一棒,獨自哭泣,懷疑是不是診斷錯誤,求家人告訴實情。(2)掙扎期,包括認為是他人的錯,尋找可以接受的病因,保護隔離(有苦在心口難開,擔心他人的眼光)。(3)崩耗(覺得很累而易發脾氣)或接受期(患孩是家中的寶)。最後,依據研究結果討論唐氏症嬰幼兒家庭的動態關係,認知真相的處境,以及專業人員應有的態度。

英文摘要

The purpose of the study was to detect the subjective experience of parents having Down syndrome children under three years old. The authors as participant observers, interviewed 8 mothers and 6 fathers about their experience on disclosure of diagnosis of their child's handicap. The interview data were transcribed and analyzed by constant comparative analysis. The results manifested three adaptation stages of these parents. The stages of the adaptive process were shock and suspicion stage, struggling stage, acceptance or burnout. The experience of shock and suspicious stage included feelings of "beinghit on the head" , "crying alone" , "something wrong with the diagnosis" , "please tell me the truth". The struggling stage included blaming others, searching for acceptable causes of disease, keeping apart from other people. Acceptance was to see the child as a valued family member. Burnout was the situation of "being tired and getting angry easily". These findings can help health caregivers to understand the situation of families with Down syndrome children. Based on the results, the authors discuss the proper way to interact with these clients.

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