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研究生:楊巧如
研究生(外文):Chiao-Ju Yang
論文名稱:探討患有飲食型苯酮尿症幼兒照顧歷程之家庭壓力
論文名稱(外文):The Family Stress Experience During the Infancy of Caretaking in Classical Phenylketonuria children
指導教授:穆佩芬穆佩芬引用關係
指導教授(外文):Pei-Fan Mu
學位類別:碩士
校院名稱:國立陽明大學
系所名稱:護理學系暨研究所
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:2009
畢業學年度:97
語文別:中文
論文頁數:142
中文關鍵詞:家庭壓力苯酮尿症幼兒
外文關鍵詞:Family stressInfancy of phenylketonuria
相關次數:
  • 被引用被引用:6
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  • 下載下載:127
  • 收藏至我的研究室書目清單書目收藏:4
本研究運用家庭壓力脈絡模式,家庭系統思維,探討患有飲食型苯酮尿症幼兒父母的家庭壓力經驗之本質結構。研究運用質性調查法,採立意取樣,以一對一的深度訪談方式,收集台北某醫學中心8位患有飲食型苯酮尿症幼兒父母在照護歷程上的家庭壓力經驗。資料分析達飽和時即停止收案。訪談資料依內容分析的方式萃取意義,在嚴謹度上依Lincoln及Guba (1985) 所提出的自然主義調查法之真實性、契合性、檢核性及原質性四項嚴謹度準則作為標準。研究結果以五個主題呈現:一、遺傳疾病帶來的震驚及社會烙印;二、飲食控制對家庭生活的影響;三、家庭系統改變與照顧壓力;四、家庭調適與因應;五、家庭資源。期望此研究結果能讓護理人員對飲食型苯酮尿症幼兒的家庭壓力有更深一層的體會及感受,實證性資料可提供護理人員具主體性的護理措施來幫助家庭調適。
This study intends to investigate the essence structure of the family stress experience during the infancy of caretaking classical phenylketonuria children. The design of interview guides was based on the definition of family stress theory and family system theory. A purpose sampling of the caretakers who had classical phenylketonuria children was invited from one medical center in Taipei. Data were collected by face-to-face in-depth interviews and analyzed by qualitative content analysis method. The trustworthiness was examined by Lincoln and Guba (1985) principles. The result of the study appears on five themes: 1. Genetic diseases caused by shock and social stigma; 2. Diet control makes the impact on family life; 3. Family system changes and caretaker's pressure; 4. Family adjustment and coping; 5. Family resources. The results will provide family nurses to understand the family stress from the classical Phenylketonuria children family. With evidence based data, nurses could design a specific nursing plan to promote family cope.
緒論
第一節 研究動機與重要性……………………………………………1
第二節 研究目的………………………………………………………4
第三節 名詞界定………………………………………………………4
第二章 文獻查證
第一節 家庭系統轉型之壓力…………………………………………5
第二節 苯酮尿症簡介…………………………………………………12
第三節 患有飲食型苯酮尿症兒童的家庭壓力………………………20
第三章 研究方法
第一節 研究設計………………………………………………………29
第二節 研究情境及對象………………………………………………30
第三節 研究步驟………………………………………………………31
第四節 資料處理與分析………………………………………………34
第五節 研究的嚴謹度…………………………………………………35
第六節 倫理考量………………………………………………………36
第四章 研究結果
第一節 研究對象之家庭基本資料……………………………………37
第二節 研究結果………………………………………………………39
第五章 討論 …………………………………………………………77
第六章 結論與建議
第一節 結論…………………………………………………………104
第二節 護理實務上的應用…………………………………………105
第三節 研究限制……………………………………………………109

參考文獻
中文部分………………………………………………………………110
英文部分………………………………………………………………112

附件
附件一 受試者同意書………………………………………………120
附件二 兒童、家庭基本資料表……………………………………124
附件三 前趨研究訪談文稿…………………………………………125
附件四 資料分析步驟範例:原始資料→有意義的句子→意義萃取…………127
附件五 資料分析步驟範例:意義萃取→描述共通性→初步主題形成…………129
附件六 資料分析步驟範例:初步主題→描述共同特質特性→次主題…………132
附件七 資料分析步驟範例:次主題→描述共通性→主題形成…………133
附件八 臨床護理指引………………………………………………134
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