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研究生:朱怡勳
研究生(外文):CHU,I-HSUN
論文名稱:主要照顧者面對新診斷兒童癌症病童初次返家後之居家照護經驗
論文名稱(外文):The Home Care Experiences of Primary Caregivers of Caring for Childhood Cancer After The First Phase of Chemotherapy
指導教授:鄭夙芬鄭夙芬引用關係
指導教授(外文):Cheng, Su-Fen
口試委員:吳維紋 邱慧洳
口試委員(外文):Wu, Wei-Wen Chiu,Hui-ju
口試日期:2015-01-27
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:2015
畢業學年度:103
語文別:中文
論文頁數:84
中文關鍵詞:兒童癌症居家照護經驗主要照顧者第一階段化學治療初次返家
外文關鍵詞:Childhood cancerHome care experiencePrimary caregiversFirst phase chemotherapyInitial discharge
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兒童癌症隨著存活率逐年提升,經治療後初次返家照護,對主要照顧者會產生極大壓力,面對的問題,包括對飲食、環境的安全、疾病調適、因應、學習照護技巧,皆造成主要照顧者心理負荷,因此初次返家後照護問題需被關注。
本研究目的在了解主要照顧者面對新診斷兒童癌症病童初次返家後居家照護經驗。研究設計以描述性質性研究之深度訪談法進行,訪談15位主要照顧者。研究結果共涵蓋四個主題與十三個次主題。在「家庭生活步調改變」主題中有三個次主題,分別為「家庭生活忙碌、混亂、緊湊」、「試圖掌控居家照護所有的事物而感到精疲力竭」、「難以全面顧及其他成員的照顧」。在「對居家照護處處感到擔心」主題中有四個次主題,分別為「對照護環境安全的擔心」、「食物選擇及準備的困擾」、「照護過程的學習壓力」、「面對孩子身心變化卻無法幫忙」。在「無時無刻的呵護」主題中有二個次主題,為「隨時警覺病童病情變化」、「出現愧疚感及補償性照護行為」。在「學習疾病照顧的調適過程」主題中有四個次主題,為「獨立扛起照顧責任」、「學習正向調適」、「接受家人及其他人員的支持及鼓勵」、「感恩惜福」。
此研究結果顯示主要照顧者對初次返家照護易受到個人信念、家庭背景、生活環境、支持系統所影響。研究結果亦顯示初次返家在照護上,以第一週壓力最大,尤其是前三天,確實會造成一個家庭功能失衡且主要照顧者會感受到壓力大,但隨著時間的延長,照顧者會逐漸學習自我調適,增加照護的信心,此結果可提供醫護人員對返家照護參考,讓病童返家後能得到更好的照護品質。

The survival rate of childhood cancer has increased. For primary caregivers, the pressure of providing the first care at home after their child’s first round of cancer treatment is tremendous. Factors such as nutrition, environmental safety, adjustment to illness, coping and learning care skills contribute to their distress. It is critical to investigate the experiences of these primary caregivers.
The purpose of this descriptive qualitative study was to understand the experiences of primary caregivers as they provide the first care at home to their child with newly diagnosed cancer after the first round of chemotherapy. The results from the in-depth interviews with 15 primary caregivers revealed four themes and 13 sub-themes: (1) altered family pace (subthemes: altered family integrity, tense/confused life, compact/cumbersome lifestyle, unresolvable mental pressure), (2) worrisome of home care details (subthemes: concerns regarding environmental safety, distress from food selection/preparation, learning stress of care process, inability to help Children with physical and psychological change), (3) uninterrupted care (subthemes: condition changes all the time alert for sick children, compensatory care behaviors, perception of being irreplaceable), and (4) adaptation process of learning to take care of the disease (subthemes: providing care independently, positive adjustment learning, Thanksgiving.
Primary caregivers were affected by personal beliefs, living environment, and support systems as they provided initial care at home. The result showed that primary caregivers felt the greatest stress during the first week, especially the initial 3 days after returning home for the first times. However, their confidence in providing care increased with time as they gradually adapted. The findings offer healthcare providers insight into providing quality care for children with cancer.

中文摘要 …………………………………………………………………………… i
英文摘要 …………………………………………………………………………… ii
目次…………………………………………………………………………………… ⅲ
表次…………………………………………………………………………………… ⅳ
圖次…………………………………………………………………………………… ⅴ
第一章 緒論
第一節 研究背景與動機 ………………………………………………………… 1
第二節 研究目的 ………………………………………………………………… 5
第三節 研究問題 ………………………………………………………………… 5
第四節 名詞界定 ………………………………………………………………… 5
第二章 文獻探討
第一節 兒童的發展特色………………………………………………………… 6
第二節 返家照護需求…………………………………………………………… 8
第三節 兒童癌症居家照護需求相關研究……………………………………… 11
第四節 總結……………………………………………………………………… 20
第三章 研究方法
第一節 選擇現象學研究法的原因……………………………………………… 21
第二節 研究設計………………………………………………………………… 22
第三節 研究情境及對象………………………………………………………… 22
第四節 研究工具 ………………………………………………………………… 23
第五節 研究步驟 ………………………………………………………………… 24
第六節 前趨研究 ………………………………………………………………… 24
第七節 資料處理與分析………………………………………………………… 25
第八節 研究的嚴謹度…………………………………………………………… 26
第九節 倫理考量 ……………………………………………………………… 28
第四章 研究結果
第一節 研究對象之基本資料…………………………………………………… 29
第二節 研究結果 ………………………………………………………………… 32
第三節 總結……………………………………………………………………… 64
第五章 討論與結論
第一節 研究結果………………………………………………………………… 65
第二節 討論 ……………………………………………………………………… 66
第三節 結論 ……………………………………………………………………… 80
第四節 研究建議………………………………………………………………… 81
第五節 研究限制………………………………………………………………… 84
參考文獻
中文部分…………………………………………………………………………… 85
外文部分…………………………………………………………………………… 90
附錄
附錄一 個案基本資料表……………………………………………………… 95
附錄二 半結構式訪談指引……………………………………………………… 96
附錄三 訪談邀請同意書………………………………………………………… 97
附錄四 機構同意書…………………………………………………………… 98
附錄五 受試者同意書………………………………………………………… 101
附錄六 臨床試驗結業證書………………………………………………… 106
表  次
表4-1病童及主要照顧者基本資料一覽表…………………………………… 30
表4-2研究結果一覽表 ………………………………………………………… 32
圖  次
圖1-1 102年度兒童癌症新發病個案疾病分類、年齡及性別統計……… 2

中文部分
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外文部分
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