臺灣博碩士論文加值系統

先天性腎上腺增生症（CAH）為體染色體隱性遺傳且具潛在威脅生命的疾病，自2003年起國內新生兒篩檢開始自費檢查此項目，2006年七月起正式由政府補助執行篩檢，護理人員不僅應對CAH個案家庭提供適當照護、支持與衛教，也應了解他們的家庭經驗以提供完整的照護。本研究目的為了解先天性腎上腺增生症患童父母之家庭經驗，採敘事研究設計，於2006年12月至2007年2月，訪談有罹患先天性腎上腺增生症患童之父母，共五個家庭接受訪談。針對父母的家庭經驗敘事，反覆閱讀並依不同脈絡將五個家庭的故事重現，而後歸納出故事線的主軸。五個家庭經驗故事裡，共歸納出五個重要主題，分別為「迷霧中的靠山」、「烙印的枷鎖」、「指引的明燈」、「一生的共存」、「難言的秘密」。研究結果呈現患童父母深入且多元的家庭經驗，藉此作為未來護理人員協助及整合此類家庭醫療資源與長期照護計畫之參考。

Congenital adrenal hyperplasia (CAH) is an autosomal recessive disorder that results in improper steroid hormone synthesis. CAH was selected for newborn screening in Taiwan since 2003 and was partly subsidized by government since 2006. Therefore, nurses should not only be knowledgeable on CAH to provide appropriate nursing care, support, and education for patients and their families, but also understand their family experiences to offer the holistic care. The aim of this study was to understand the family stories of parents of children suffering from CAH. Parents of children affected by CAH were invited to share their family experience via story telling after fully informed consent. Each parent was interviewed 2-4 times. The information from the father/mother of 5 families was analyzed using narrative analysis. Five stories of each family’s experiences are constructed. Key elements of the narrative threads are the prop in the mist, shackles of stigma, the guiding light, coexistence throughout a life, and difficult to share the secret. The results could be the valuable references to understand the families’ experiences in adapting to the disease, and could be the basis for nurses to integrate the medical resources and long-term care plan for families with CAH children.

中文摘要 I
ABSTRACT II
致謝 III
目錄 V
附錄 IX
表目錄 X
圖目錄 X
第一章 緒論 1
第一節 研究動機與重要性 1
第二節 研究問題與研究目的 4
第三節 名詞定義 5
第二章 文獻回顧 6
第一節 先天性腎上腺增生症 6
ㄧ、生理機轉 7
二、臨床症狀 9
三、診斷與治療 11
四、不同發展時期的挑戰 12
五、護理照護 16
六、不同發展階段個案面臨問題之統整 18
第二節 慢性病兒之家庭調適與照護 21
一、「正常化」概念 21
二、慢性病兒父母的調適 23
三、慢性病兒家庭之護理 28
第三節 敘事研究 31
ㄧ、質性研究的世界觀 31
二、敘事的意義 34
三、敘事研究 34
四、敘事的分析方法與倫理考量 38
第三章 研究方法 42
第一節 研究設計 42
第二節 研究參與者 43
第三節 研究者與前趨研究 45
第四節 資料蒐集方法與過程 47
第五節 資料分析與嚴謹度 49
ㄧ、資料分析 49
二、敘事有效性 50
第六節 倫理考量 55
第四章 結果 57
第一節 五個CAH家庭故事 57
阿萍的故事 59
阿秀的故事 66
阿文與阿慧的故事 72
阿月的故事 78
阿勇與阿霜的故事 84
第二節 家庭經驗的故事線 94
主題一：迷霧中的靠山 94
主題二：烙印的枷鎖 96
主題三：指引的明燈 98
主題四：一生的共存 99
主題五：難言的秘密 101
第五章 討論 104
第一節 慢性病兒家庭的調適 104
一、影響正常化的因素 104
二、正常化策略 105
三、社會對疾病的烙印 107
第二節 遺傳護理之省思 108
第三節 對於研究的省思 115
一、資料收集過程 115
二、結果呈現 116
三、未來研究 117
第六章 結論與研究限制 118
參考文獻 120

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