一位克利伯全納諾症候群學齡期兒童之護理經驗

本文描述一位克利伯全納諾症候群的學齡期兒童，在面臨確診後需立即執行硬化劑注射治療而出現哭鬧、抗拒、逃離檢查台等行為，筆者採用同理、傾聽，並以Gordon 11項功能性健康型態評估為架構，透過觀察、會談、身體評估等方式收集資料，歸納出個案有周邊組織灌流改變、焦慮及主要照顧者知識缺失等健康問題，照護期間為2020年1月10日~2020年1月17日，期間透過主動關懷及治療性關係的建立，使個案了解疾病過程及接受治療之必要，引導參與治療實際過程以減少其對未知的恐懼，在治療過程中提供個案喜愛的視頻以轉移注意力，搭配放鬆技巧、劃分階段性任務，以增進控制感及轉移對治療的焦慮，並充分向案母說明照顧方式及提供衛教之相關網站連結，引導其參與照護過程，以維護照顧者角色之功能及緩解其面對疾病照護之焦慮。兒童在面臨侵入性治療時尤其需要主要照顧者的支持及陪伴，因此護理人員在給予照護指導的同時也需注意照顧者之角色及功能。罕見疾病之照護首重提供充足與即時的衛教資源，建議可轉介個管師及病友會等作為日後長期照護之支持，提供持續性照護。

This article describes the nursing experience of caring for a school-age child with Klippel-Trenaunay syndrome. During the sclerosing agent injection treatment, the child exhibited behaviors such as crying, resisting, and attempting to escape from the examination table. The nursing care period spanned from January 10, 2020, to January 17, 2020. Using Gordon's 11 functional health patterns as a framework, we collected data through observation, interviews, and physical assessment. The identified health problems included peripheral tissue perfusion issues, patient anxiety, and insufficient medical knowledge among primary caregivers. We helped the patient understand the disease and the necessity of treatment through active care and establishing therapeutic relationships. By guiding the child through the treatment process, we reduced her fear and improved her adherence to the treatment. We distracted the child with her favorite videos, applied relaxation techniques, and broke down the tasks into stages to enhance her sense of control and reduce treatment-related anxiety. For the primary caregivers, we explained the treatment process and provided relevant health education websites to alleviate their anxiety. It is crucial to support and accompany children facing invasive treatments, emphasizing the caregiver's role and function. For patients with rare diseases, providing adequate information and resources is essential. Long-term care may benefit from referrals to a case manager and patient associations.