一位罹患先天性肌肉病變之新生兒的照護經驗

A Nursing Experience of a Newborn with Congenital Myopathy

康詩芳(Shih-Fang Kang) ； 范惠珍(Hui-Chen Fan)

《嘉基護理》 14卷1期 (2014/06) Pp. 39-47

摘要

本文旨在呈現照護一位先天性肌肉病變之新生兒的護理經驗，照護期間為2010年10月30日～12月28日，經由生理及家庭評估發現主要護理問題有：呼吸道清除功能失效、潛在危險性廢用症候群、照顧者角色緊張。照護期間依個案之需求給予適當照護，協助父母面對罕見疾病兒所帶來的衝擊，增進親子關係，並學會相關日後的照護技巧，使個案出院後能獲得較好的後續照護。

關鍵字

先天性肌肉病變 ； 罕見疾病兒 ； 照顧者角色緊張

並列摘要

This article discussed the nursing experience in caring a congenital myopathy in neonate. The nursing period was from October 30 to December 28 in 2010. The author used physical and family assessment to identify the problems, which included ineffective airway clearance, risk for disuse syndrome, caregiver role strain. The staff provided appropriate nursing care to neonate, helping the parents face the impact of a rare diseases, promoting parent-child relationship and educating them with caring skills to facilitate better quality of care upon discharge.

並列關鍵字

congenital myopathy ； rare diseases in neonate ； caregiver role strain