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

• Main Authors: Yum-Chuan Chen, 陳雲絹
• Other Authors: Mei-Chin Huang
• Format: Others
• Language: zh-TW
• Published: 2007
• Online Access: http://ndltd.ncl.edu.tw/handle/23888167802999004000

碩士 === 國立成功大學 === 護理學系碩博士班 === 95 === 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.