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研究生: 常善媚
Chang, Shan-Mei
論文名稱: 自閉症青少年母親的枷鎖
The Bondage of Mothers with Autistic Adolescent
指導教授: 徐畢卿
Shu, Bih-Ching
學位類別: 碩士
Master
系所名稱: 醫學院 - 護理學系
Department of Nursing
論文出版年: 2003
畢業學年度: 91
語文別: 中文
論文頁數: 118
中文關鍵詞: 自閉症民族誌照顧歷程青少年母親
外文關鍵詞: care experience, ethnography, adolescent, mother, autism
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  • 自閉症是終其一生無法痊癒的發展性疾病,目前國內多著重自閉症患者的早期療癒,較少了解青少年或成年之後的自閉症患者,且因主要照顧者多為母親,促使本研究者想以母親為研究主體,深入了解母親於自閉症患者進入青春期之後,所面臨的需求、壓力、與照顧歷程。
    本研究以民族誌為研究方法,過程中於母親家中進行深度訪談,並陪伴母親參與照顧孩子的日常活動以及家庭聯絡簿等內容進行資料的蒐集,進入田野共七個月的時間,結果呈現分為三個部分:一、以故事性方式描繪七位母親的生活背景;二、以主題的方式來呈現母親對孩子進入青少年特殊議題的描繪;三、根據在田野中對母親的了解後,以母親看待自己與孩子的方式為主軸,描繪母親在照顧自閉症青少年的過程中,如何與外在整個文化與社會價值互動,突破外在與內心的枷鎖,找到看待自己與孩子的方式。
    在強調以家庭為中心的概念下,照顧者於長期照護中所面臨的衝擊,亦是護理不可忽略的部分。因此,本研究結果可對自閉症青少年母親的照顧體驗有所認識與了解,做為護理人員臨床實務參考,提供更貼近個案需求的介入措施。

    Autism is an incurable and developing disease during one’s entire life. However, from literature review, there is less literature related to adolescent or adult with autism and mother is the main caregiver. Thus, the purpose of this study was to explore the care-giving experience of those mothers with autistic adolescents.
    We applied ethnography approach in this study. Data were gathered from in-depth interviews, participant observations, and school assignment notebooks. It took about seven months to collect related data. The results present three parts: (1) describing those mothers’ life experience by their narratives, (2) presenting special issues which mothers concerned, and (3) describing how mothers interact with culture and social values and overcome obstacles to find out the suitable way for treating their children and themselves as well.
    Based on the concept of family center, the impact of caregivers they faced can’t be neglect. The results could help us to understand the care-giving experience of mothers with autistic adolescents and provide appropriate interventions for their families.

    中文摘要 i 英文摘要 ii 謝辭 iii-iv 目錄 v-vii 第一章 緒論 1-3 第一節 研究背景與動機 1-2 第二節 研究目的 3 第二章 文獻查證 4-26 第一節 自閉症發展的特徵 4-7 第二節 自閉症青少年 7-11 一、青少年期的界定與範圍 二、自閉症青少年主要問題 三、一般青少年與自閉症青少年發展上的比較 第三節 母親的照顧 12-19 一、照顧的定義 二、父母對子女之照顧 三、母親對子女的照顧 第四節 自閉症青少年之母親的擔憂與壓力 19-26 一、自閉症的母親 二、自閉症青少年之母親的擔憂與壓力 三、一般青少年母親與自閉症青少年母親的比較 第三章 研究方法與設計 27-40 第一節 研究方法 27-29 一、民族誌學 二、本研究的想法與立場 第二節 研究對象 29-32 一、選樣標準 二、選樣方法 三、母親背景資料 第四節 資料蒐集方式及過程 32-36 一、資料收集的方式 ﹙一﹚深度訪談 ﹙二﹚田野觀察 ﹙三﹚文件資料的蒐集 二、資料蒐集的過程 第四節 資料蒐集與分析的嚴謹度 36-38 第五節 人權保障 39 第六節 研究者之訓練與準備 39-40 第七節 資料分析方式40 第四章 研究結果 41-96 第一節 七位媽媽的輪廓描寫 41-57 第二節 孩子處於青春期的特殊表現 58-70 第二節 探尋母親照顧的心路脈絡 71-96 第五章 討論 97-109 第一節 母親生活背景的探討 97 第二節 孩子處於青春期的特殊表現 97-98 第三節 母親的回顧-探尋照顧的心路脈絡 99-105 第四節 什麼是好的安置? 105-106 第五節 專業體系與母親需求之間的落差 106-108 第六節 田野的進與出—研究者的自我省思 108-109 參考資料 110-118 附錄

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