一位骨質石化症棄嬰行異體造血幹細胞移植之護理經驗

Nursing Experience of a Ten Months Old Abandoned Baby with Osteopetrosis who Received Allogeneic Hematopoietic Stem Cell Transplantation

10.6880/TJON.201903/SP_19.09

吳佳穎(Jia-Ying Wu)；陳麗糸(Lih-Mih Chen)；侯宥如(You-Ru Hou)

異體造血幹細胞移植 ； 骨質石化症 ； 罕見疾病 ； Allogeneic hematopoietic stem cell transplantation (allo-HSCT) ； Osteopetrosis ； rare disease

腫瘤護理雜誌

19卷增訂刊（2019 / 03 / 01）

101 - 110

繁體中文

本文探討一位罹患罕見疾病骨質石化症之十個月棄嬰，接受異體造血幹細胞移植過程，病嬰除經歷治療副作用之生理不適外，更需面臨無家屬及後續居家安置的問題。筆者照護期間自2016／3／14至2016／4／5，藉由與照護病嬰兩個月的照服員會談、身體檢查、觀察評估、臨床檢驗數值等收集資料及分析，確立個案主要健康問題有無效性保護能力、營養不均衡：少於身體需要及居家照護增進準備度。照護過程中，個案有抗萬古黴素藥性腸球菌感染，予以正壓保護性隔離及接觸隔離密集照護；照會營養師協助調整營養配方及嘗試讓病嬰開始補充副食品；對於移植後安置地點、照護人力及技能等，則透過政府社服單位、醫院社工師及個案管理師等醫療團隊，安排養護中心及3位固定照服員之照護技能訓練，提供病嬰連續性照護。由於國內有關骨質石化症合併異體造血幹細胞移植的文獻付之闕如，筆者期望藉由分享此個案的護理經驗，提供臨床移植護理師照護參考。

The purpose of the study is to discuss the experience of caring for a ten-months-old abandoned baby with a rare disease ＂osteopetrosis＂ undergoing allogeneic hematopoietic stem cell transplantation (allo-HSCT). During the allo-HSCT period, not only did the patient experience the physical discomfort of treatment side effects, but it also had to face the absence of family supports and a place to settle down after discharge from the hospital. The author provided direct care of this paitent from March 14, 2016 to April 5, 2016. After comprehensive physical examinations, observations, and interviewing with the caregiver, three main healthrelated problems identified were ineffective protection, undernurishment, and missing home care. The paitent was sent to a positive pressure isolation room during neutropenia period, because it contracted vancomycin-resistant enterococci infection. The author coordinated with the nutritionist for diet planning of special nutrition formula with addition of the non-staple food. Cooperation among government social service units, hospital social workers, case managers and other medical teams was arranged for an institutional care center and three caregivers who were trained to provide continuous care of the patient. Articles on patient with osteopetrosis undergoing allo-HSCT are not common. Therefore, the author would like to share the experience as a reference with other nurses in the transplant units.

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