先天性腎上腺增生症患童父母之家庭經驗敘事

Narratives of Family Experience from Parents of Children with Congenital Adrenal Hyperplasia

陳雲絹(Yun-Chuan Chen) ； 林秀娟(Shio-Jean Lin) ； 林佳霓(Chia-Ni Lin) ； 黃美智(Mei-Chih Huang)

《醫護科技期刊》 12卷3期 (2010/09) Pp. 199-211

https://doi.org/10.6563/TJHS.2010.12(3).4

摘要

背景：先天性腎上腺增生症(Congenital Adrenal Hyperplasia, AH)爲體染色體隱性遺傳、具潛在生命威脅且伴隨個案一生的疾病，其家庭常掙扎於長期照顧與疾病難書的困境中，現CAH雖已併入新生兒篩檢項目之一，但卻缺乏本土文獻以協助CAH家庭獲得良好照護。目的：了解CAH患童之父母的家庭照護經驗。方法：採敘事研究設計，於2006年12月至2007年6月，共訪談五個罹患CAH患童之父母。資料分析乃針對父母的家庭經驗敘事，反覆閱讀並依不同脈絡重現五個家庭的經驗故事，而後由故事中共同的關鍵情節，歸納出故事線的主軸。結果：重現五個家庭的經驗故事，並由其中歸納三個關鍵情節，分別爲「迷霧中的靠山、指引的明燈」、「烙印的枷鎖、難書的秘密」、「一生的共存」。結論／實務應用：本文可了解家庭適應CAH疾病的經驗，作爲護理人員協助及整合CAH家庭醫療資源與長期照護計畫之基礎。

關鍵字

敘事研究 ； 先天性腎上腺增生症 ； 父母 ； 適應經驗

並列摘要

Background: Congenital adrenal hyperplasia (CAH) is an autosomal recessive disorder that threatens life and coexist with the affected child and his/her family through their lives. Families with CAH children often struggle with long-term care and suffer from issues related to disease disclosure. Although CAH is a screening item for newborns in Taiwan and some children have been diagnosed as CAH, few studies related to the local experiences of the parents and their CAH children are available to provide good nursing care for CAH families. Purpose: The aim of this study is to understand the experiences of families of CAH children. Methods: A narrative research design was used. From December 2006 to June 2007, five sets of parents with CAH children were recruited and invited to share their experiences with CAH. Narrative materials were read repeatedly and five family stories were reconstructed by the context of each family respectively. Consequently, a story line was formed from common key plots in these stories. Results: From interviews with the five families, this study identified the three common aspects that highlight their experiences with CAH. In sequence, these aspects were 1) a need for mutual support and optimism when confronted with this oppressive illness, 2) distress in being associated with a negative disease stigma and facing an uncertain future, 3) difficulty co-existing with a lifelong disease. Conclusions/Implications for practice: Analytical results will be a valuable reference for understanding the experiences of families in adapting to CAH, and will serve as a basis for nursing professionals in integrating medical resources and designing long-term care plans for families with CAH children.

並列關鍵字

Narrative research ； congenital adrenal hyperplasia CAH ； parents ； family experience

參考文獻

呂宜珍、林秀娟、黃美智(2003)。新生兒篩檢之社會衝擊與倫理考量。台灣醫學。7(5)，774-779。

何粵東(2005)。敘說研究方法論初探。應用心理研究。25，55-72。

李美秀(2004)。烙印的概念分析。長庚護理。15(2)，185-191。

李慧貞、毛新春、陳月枝、沈銘鏡(2000)。血友病病童母親的照顧經驗。護理研究。8(5)，579-591。

利翠珊(2003)。身心障礙兒童家庭中夫妻的壓力、付出與恩情。中華心理衛生學刊。18(2)，25-54。