The Adaptation Process after Disclosure of Diagnosis in Parents of Children with Down Syndrome

唐氏症嬰幼兒父母認知真相後之調適過和

蔣欣欣(Hsien-Hsien Chiang) ； 喻永生(Yeong--Seng Yuh)

《護理研究》 5卷1期 (1997/02) Pp. 19-29

https://doi.org/10.7081/NR.199702.0019

摘要

本研究旨在瞭解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。爲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較分析，結果發現家庭調適套曆程可區分爲三個階段：(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)挣扎期，包括認爲是他人的錯，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系，認知真相的處境，以及專業人員應有的態度。

關鍵字

唐氏症 ； 認知真相 ； 父母調適曆程

並列摘要

The purpose of the study was to detect thd 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 ”being hit 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.

並列關鍵字

Down syndrome ； disclosure of handicap ； parental coping process