照護一位Wiskott-Aldrich症候群幼兒及其主要照顧者之護理經驗

A Nursing Experience for an Young Children with Wiskott-Aldrich Syndrome

劉閔惠(Min-Hui Liu) ； 張鈞竹(Chun-Chu Chang) ； 林宥葶(Yu-Ting Lin)

《馬偕護理雜誌》 12卷2期 (2018/07) Pp. 76-87

https://doi.org/10.29415/JMKN.201807_12(2).0007

摘要

本文主要描寫一位Wiskott-Aldrich症候群幼兒及其主要照顧者之護理經驗，個案因Wiskott-Aldrich症候群導致血小板低下及免疫力低下入院，且預做移植治療，對家庭造成衝擊，故引發筆者寫作動機。筆者於2017年4月15日至2017年6月16日照護期間，經由觀察、會談、身體評估及直接照護等方式收集資料，確立個案與案母有三個主要健康問題：一、無效性保護能力/與疾病導致血球低下有關；二、皮膚完整性受損/與疾病因素有關；三、照顧者角色緊張/與個案疾病、家庭支持系統有關。筆者依據各項健康問題給予相對應護理措施，運用症狀護理，提供個案及家屬持續性的照護與關懷，降低其合併症的發生，並改善家屬因照顧個案產生之焦慮。建議臨床護理人員可多參加兒童罕見疾病之相關學術研討會或相關教育訓練，將有助於增加兒童罕見疾病照護之相關知識，藉以提升照護此類病童整體之照護品質。

關鍵字

幼兒 ； Wiskott-Aldrich症候群 ； 罕見疾病

並列摘要

This article describes a Wiskott-Aldrich syndrome care experience. The case of Wiskott- Aldrich syndrome caused by low platelet and low immunity admission, and pre-transplant treatment, the impact on the family, triggered the author writing motivation. During the period from April 15, 2017 to June 16, 2017, the author collected information of three major health problems about the case and the case’s mother by observation, talks, physical assessment and direct care. The three major health problems were invalidity protection; impaired skin integrity and caregiver role strain. The author provided appropriate care measures based on health problems, used symptomatic care, provided continuous care for cases and their families, reduced the incidence of comorbidities, and improved the anxiety of family members. It is recommended that clinical nursing staff be able to participate in the training and publication of relevant academic seminars on children's rare diseases and will help to increase the knowledge of children's rare disease care in order to enhance the care quality of such patients as a whole.

並列關鍵字

young child ； Wiskott-Aldrich syndrome ； Rare disease