Nursing Experience of a Child With Difficulty Breathing With End-Stage Niemann-Pick Disease Type C

Ying Chu Chen, Su Jung Chen, Mei Chih Huang

Research output: Contribution to journalArticlepeer-review

Abstract

TITLE: 一位尼曼匹克疾病C型末期合併呼吸困難住院病童之護理經驗. 本文敘述一位尼曼匹克疾病C型(Niemann-Pick disease type C)末期病童住院照護經驗,照護期間從2018年4月至6月。尼曼匹克疾病C型是一種基因異常之罕見疾病,因無法代謝脂質導致肝脾腫大、呼吸困難及中樞神經退化。因罕見疾病個案數少,醫護人員缺乏相關照護經驗,故對於症狀評估、用藥調整,及預測生命存活期等均有困難,加上面對家屬情緒的隱形壓力,末期照護困難重重。筆者藉由整體性和家庭評估,了解病童與其家庭之護理問題,確立主要護理問題為呼吸困難與照顧者角色緊張,故啟動多專業團隊照護協助症狀控制及出院準備,並藉由安寧緩和家庭會議整合相關資源,再經家庭會議建立家人共識,讓病童順利出院返家及持續醫療關懷,不僅提升病童照護品質及家庭凝聚力並減輕照顧者負荷。期望能藉由分享此照護經驗,作為罕病末期病童出院準備服務之參考。.

Original languageEnglish
Pages (from-to)89-96
Number of pages8
JournalHu li za zhi The journal of nursing
Volume67
Issue number6
DOIs
Publication statusPublished - 2020 Dec 1

All Science Journal Classification (ASJC) codes

  • Nursing(all)

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