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.

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