照護一位瓜胺酸血症早產兒之護理經驗

The Nursing Experience of Caring for a Premature Infant with Citrullinemia

林欣怡(Hsin-Yi Lin) ； 吳紹歆(Shaw- Shin Wu) ； 黃惠美(Hui-Mei Huang)

《志為護理-慈濟護理雜誌》 14卷1期 (2015/02) Pp. 105-112

摘要

本文為照護一位瓜胺酸血症之早產兒，案父母面對個案有餵食困難、需長期服藥治療、依病情調整特殊配方奶濃度及居家照護等問題。護理期間為2012年12月24日至2013年2月1日，藉由臨床照護、觀察及與家屬會談等方式，運用Gordon十一項健康功能型態評估，確立護理問題有潛在危險性肺吸入、低效性的嬰兒哺餵、照顧者角色緊張、營養狀況改變：少於身體需要、知識不足等護理問題。筆者同理案父母的焦慮，提供彈性會客並共同制定照護計劃，增進照護知識與技能，進而能安心出院返家；透過電訪，得知個案已不需胃管餵食且體重穩定成長；建議未來照顧類似個案，應配合案父母學習狀況，提供更多彈性的回覆示教，並給予正向的鼓勵與肯定。希望藉由本文提供罕見疾病之早產兒護理經驗，作為未來同仁照顧類似病嬰及家庭之參考。

關鍵字

瓜胺酸血症 ； 早產兒 ； 出院準備服務

並列摘要

This article describes the nursing experience of caring for a premature infant with citrullinemia. The difficulties that parents had to overcome included feeding difficulties, long-term use of medication, feeding formula adjustment in accordance with the infant’s condition, and the need of long-term home care. Between December 24th 2012 and February 1st 2013, Gordon’s eleven functional health patterns was applied in data collecting via clinical care, observation, family consultation. The author identified issues of potential risks of aspiration pneumonia, ineffective feeding, caregiver’s nervous breakdown, change in nutritional status and inadequate knowledge. The author also recognized parents’ anxiety, therefore arranged flexible home visit schedule and collaborated with the parent to develop care plan. As a result, they were able to care the infant at home with ease. During follow-up, it was no longer necessary to NG feed the infant and the body weight was steadily increasing. It suggests that in taking care of similar cases, patient teaching should be adjusted accordingly, health professional should provide more opportunities of handson practice and give feedback to their contribution and hard-work. We hope that the nursing experience provided in this article can serve as a reference for our colleagues who care for similar patients.

並列關鍵字

citrullinemia ； discharge planning ； premature infant