照護一位軟骨發育不全症患兒之護理經驗

The Nursing Experience of Caring a Child of Achondroplasia

李芊樺(Chien-Hua Li) ； 吳秋玉(Chiou-Yu Wu)

《安泰醫護雜誌》 21卷2期 (2015/12) Pp. 47-59

摘要

本文為照護一位因罹患上呼吸道感染住院，在治療過程中發現個案為軟骨發育不全之罕見疾病案例，以致於需長期依賴氧氣之照護經驗。護理期間自99年11月23日至99年12月23日，筆者運用整體性評估，透過直接照護、觀察、與家屬會談及出院後電訪方式收集資料；經分析及歸納後，發現健康問題有：（一）呼吸道清除功能失效／與支氣管感染使分泌物滯留有關。（二）潛在危險性損傷／與基因缺陷易導致脊髓神經受損有關。（三）照顧者焦慮／與主要照顧者對於疾病治療不明確有關。（四）照顧者角色緊張／缺乏輔具使用經驗及無法預期的養育問題。透過整個護理過程，依個案的需求提供適當照護，並指導案母疾病照護認知及技巧，增進其居家照護能力，協助確認可運用的社會福利資源，以減輕焦慮的情緒，使其有正向的調適方法，以渡過家庭危機。

關鍵字

軟骨發育不全症 ； 罕見疾病 ； 家庭

並列摘要

This is a case of nursing experience in hospitalization care necessitated by suffering from upper respiratory tract infection, found in the course of treatment of cases of achondroplasia, a rare disease requiring long-term dependence on oxygen. During a nursing period 23 November to 23 December 2010, the author used holistic health and family assessment through direct care, observation, interview, and post-discharge telephone follow-up to collect data. By analyzing and summarizing, cases of health problems were identified: ineffective airway clearance, risk for injury, anxiety, and caregiver role strain. Through the entire care process, appropriate care was provided according to the client’s needs and to guide his mother. Disease awareness and care skills enhanced family ability for home care, and helped confirm the availability of social welfare resources to alleviate anxiety, thereby modelling a positive adaptation method to resolve family crisis.

並列關鍵字

Achondroplasia ； rare disease ； family