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研究生: 鄧佳宜
Teng, Chia-Yi
論文名稱: 重度心智障礙者家長親職成長團體之實踐脈絡與長期參與者之心路歷程
The Implementation of support group for parents of children with severe intellectual disabilities and narrative inquiry of long term participants
指導教授: 陳昭儀
Chen, Chao-Yi
學位類別: 博士
Doctor
系所名稱: 特殊教育學系
Department of Special Education
論文出版年: 2019
畢業學年度: 107
語文別: 中文
論文頁數: 288
中文關鍵詞: 重度智能障礙者重度自閉症者家長親職成長團體敘事
英文關鍵詞: people with severe intellectual disabilities, people with severe autism symptoms, parents, parent support group, narrative
DOI URL: http://doi.org/10.6345/NTNU201900460
論文種類: 學術論文
相關次數: 點閱:240下載:32
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  • 本研究以家長作為起點,憑藉著家長的述說,反映出在重度心智障礙影響下的生活,而更靠近父母的處境以及自身對於這般處境如何解讀與因應。當家長受苦的臉,在我面前顯現,當下我內心不安的感覺,成為完整知識結構的破口,他人已然在我之中,而啟動了探索與實踐如何支持父母為重度心智障礙孩子提供更好的支持,透過親職成長團體的籌畫與運作,確保能盡力回應整個家庭所需求的各個面向。在推動團體運作的過程中,團體帶領者須確保團體成為接納家長與孩子的友善環境,持續且長期關心與關注家長的生活,連結與整合相關資源以回應生活多元面向之需求,持續應答家長的提問,鼓勵與引導其穿越心智障礙帶來的困境,時常反思是「為誰的利益」,才能讓家長的籲求牽引著團體來跟隨而進行調整。團體長期的停留與主動的介入,使家長有機會超越單一、被框架的角色,而能更主動地去作為,對於協助家庭撐過停滯期,抱持希望,度過危機時期,持續成長相當有幫助,但對於主流社會的框架,公共政策,校園的友善,以及家庭成員的支持則仍力有未逮。

    The purpose of this narrative inquiry is to explore how parents understand and experience their own involvement in support groups for parents of raising children with severe intellectual disabilities and its impact on their life. The suffering face speaks to me and thereby invites me to a relation to explore how we can give support for parents to provide more and better support for their children with severe intellectual disabilities. As the professionals create a child friendly group environment, listen more to the views of parents, remain concerned about their problem, integrate community resources, and make time for Self- reflection, group will meet the need of parents.
    Group can help parents take initiative, learn and grow, resilient to difficult life challenges, overcom the obstacles in their life, and move on with hope
    Group cannot do much about what siblings need and how to provide them more sensitive support, how to build a stronger circle of support with parents and other family members, how to reduce the influence of mainstream culture on the way of thinking on student with severe intellectual disability, and long-term care policy.

    第一章 緒論 1 第一節 研究背景與動機 2 第二節 研究目的 13 第三節 名詞解釋 14 第二章 文獻探討 17 第一節 時代變遷下心智障礙者父母的角色 17 第二節 心智障礙孩子主要照顧者之需求與挑戰 23 第三節 親職成長團體的歷史經驗與啟發 35 第三章 研究方法 49 第一節 研究取向 49 第二節 研究場域 57 第三節 研究參與者 58 第四節 研究者角色 63 第五節 資料蒐集 68 第六節 資料分析 72 第七節 研究建構歷程 76 第八節 研究品質 77 第九節 倫理議題 81 第四章 結果分析與詮釋 83 第一節 團體之實踐脈絡 83 第二節 黑胖、寶月、Fay、妮媽、阿松的生命故事 113 第四節 反思 222 第五節 綜合討論 233 第五章 結論與建議 243 第一節 結論 243 第二節 研究限制 251 第三節 建議 252 參考文獻 261 附錄一 訪談邀請函 287 附錄二 知情同意書 288

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