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研究生:游嘉瑋
研究生(外文):Chia-Wei Yu
論文名稱:家屬之呼吸器維生治療決策經驗
論文名稱(外文):Family Caregivers’Experience in Making Life-Sustaining Treatment Decision for Invasive Mechanical Ventilation
指導教授:邱秀渝邱秀渝引用關係
指導教授(外文):Shiu-Yu Katie C. Lee
口試委員:李玉嬋陳彥元
口試委員(外文):Yu-Chan Li
口試日期:2014-01-21
學位類別:碩士
校院名稱:國立臺北護理健康大學
系所名稱:護理研究所
學門:醫藥衛生學門
學類:護理學類
論文種類:學術論文
論文出版年:2014
畢業學年度:102
語文別:中文
論文頁數:112
中文關鍵詞:呼吸器維生治療決策經驗
外文關鍵詞:Invasive Mechanical VentilationLife-Sustaining TreatmentDecision-making experience
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維生呼吸器治療的決策攸關病人的生命、生活品質與家庭功能;且多因重症病情而需家屬執行代理決策。但國內仍缺乏相關家屬代理維生治療的決策的資料以助照護措施的設計。故本研究目的旨在探討加護病房家屬面對重症的親人需要呼吸器維生治療的決策經驗,以助瞭解家屬在決策時的心境、想法與困難,及其可能的因應之道。本研究採質性研究設計,以開放性問句的錄音訪談,進行資料的收集。於北部某教學醫院的加護病房,以立意取樣方式招募有呼吸器維生治療需求的加護病房重症病患之家屬;共有12位身為此疾病治療決策者或照顧者的家屬參與本研究,其涵蓋男女性別、青年至中年年齡層與不同教育程度的家屬。錄音資料轉騰逐字稿後應用分析軟體Nvivo 10.0,將原始資料統整與編碼分類。家屬經驗中呈現維生呼吸器治療的抉擇包含多元的決策事件,如DNR/移除呼吸器、置入人工氣管/氣切且接受呼吸器治療、居家或機構照護。研究發現維生呼吸器治療的決策為困難的決策過程,且以生命價值為基礎的生與死抉擇;家屬更歷經生死關頭走過失落重建的經驗。受訪家屬描述加護病房呼吸器維生治療決策是「環環相扣的過程」,事件本身有多個決策點,彼此關連且重複的維生治療決策。家屬分享的決策過程初期是在加護病房「難以知情的決策下」所做的決定,但過程中家屬不斷「追求有勝算的賭博」;甚至這決策歷程是一個「震盪下的家庭決策」的過程。家屬面臨重症親人的呼吸器維生治療決策是以活著就好、有尊嚴及痛苦為基礎的生命價值來抉擇,但後續體認到部分情境如照顧能力、經濟及生活衝擊等的浮現。雖家屬代理重症親人抉擇,但這決定乃依據重症親人本人的或以其自我的生命價值為基礎。家屬經驗了面對「預期性失落與不捨」的哀傷感受,同時也「面對家庭內在情權與責任」的衝擊,部分家屬也經歷了重整自我或肯定自我的過程。研究發現家屬代理親人做呼吸器維生治療的決策是困難與複雜,且在預期失落的衝擊下難以落實知情同意的決策過程,需醫護人員的協助與支持。本研究可以增進醫護人員對家屬決策歷程與需求的進一步了解。
Life-support ventilator treatment decisions matters of patient life and quality of life, and family function. Family members usually need to play as the surrogate for the patients for this decision-making due to severe illness. There is limited information about the surrogate life-support decision-making in Taiwan. Thus, the purpose of this study is to explore the family’s decision-making experience for the patients’ life-support ventilator treatment in ICU. This study adopted a qualitative research design and use taped, open-ended interview for data collection. By purposive sampling, 12family members were interviewed to share the decision-making process for their ill relatives who demanded invasive mechanical ventilation in the ICU and their personal experience during the process. These family were either caregivers or surrogate decision-maker. Recorded data were transformed into verbatim, and coding and classification by using Nvivo version 10.0. Families described the process as an iteration to decide DNR/with draw vs receiving the ventilator, receiving tracheostomy vs endo, home vs institutional care. Three themes were identified, including that life-support ventilation treatment decision-making was a difficult and complex process, decisions were based on the life-death values, and family members experienced the reconstruction in the process. The family shared that the decision-making was difficult as “informed” decision-makers in the ICU, but continuously pursuing the odds for the gambles, and oscillation in the family decision making process. The decision was based on the values to live, to live with dignity and without suffering, but in recognition of caregiving burden, financial burden and impacts on family life. During the process, the family members experienced "anticipating loss and unbearableness in seeing the patient suffering," but also faced "the mixed of love, inherent rights and responsibilities in the family."Some family members also went through restructuring process of self, family relationship and grief. The surrogate decision-making process for critically-ill relatives’ life-support ventilation treatment decisions was difficult and complex, and the family need further support in making an informed, non-regretful decision. This research can help the clinicians to understand family’s surrogate decision-making and to plan for supportive care.
口試委員審查合格同意書 i
誌 謝 i
中文摘要 ii
英文摘要 iii
第一章 緒論 1
第一節人工氣道與呼吸器的功能及必要性 1
第二節 呼吸器使用的兩難決策 2
第三節 家屬代理決定 4
第四節 研究目的 6
第二章 文獻探討 7
第一節 積極下的失落 7
第二節 生命的抉擇與衝突 11
第三節 華人文化下家屬代理決策 15
第四節 研究問題 18
第五節 名詞界定 18
第三章 研究方法 21
第一節 研究設計 21
第二節 研究對象 22
第三節 研究工具 23
第四節 資料收集過程 25
第五節 資料處理與分析 26
第六節 研究嚴謹度 27
第七節 研究倫理考量 29
第四章 研究結果 30
第一節 受訪家屬與重症親人背景描述 31
第二節 困難的決策過程 - 35 -
第三節 以生命價值為基礎的生與死的抉擇 - 49 -
第四節 生死關頭失親威脅與重建 - 60 -
第五章 討論 - 74 -
第一節 困難的決策過程 - 74 -
第二節 呼吸器維生治療的決策 - 76 -
第三節 華人文化家庭的決策 - 79 -
第六章 結論與建議 - 81 -
第一節 結論 - 81 -
第二節 研究限制 - 82 -
第三節 研究建議 - 83 -
參考文獻 - 84 -
附件 - 93 -
附件一:訪談指引 - 93 -
附件二:受訪者基本資料調查表 - 94 -
附件三:訪談說明單 - 95 -
附件四:訪談反思 - 96 -
附件五:計畫執行許可書 - 100 -
附件六:受訪者同意書 - 101 -

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