多發性神經纖維瘤症患者之照護：個案報告

The Experience of Caring a Young Woman with Neurofibromatosis in a Nursing House

許馨文(Hsin-Wen Hsu) ； 姚建安(Chien-An Yao) ； 呂碧鴻(Bee-Horng Lue)

《臺灣家庭醫學研究》 3卷1期 (2005/01) Pp. 39-48

https://doi.org/10.29475/TFMR.200501.0005

摘要

多發性神經纖維瘤症（neurofibromatosis; 簡稱NF）是一種遺傳性的神經系統疾病，患者的神經纖維細胞因爲不正常的增生而形成許多的腫瘤，這些腫瘤常伴隨周圍組織的增生與變形，如皮膚的異常或骨骼的變形等；到目前爲止，此病並沒有根治的療法。而本文即在探討一位NF年輕女性患者，因頸內動脈瘤壓迫腦神經，導致困難吞嚥及說話障礙，送至醫學中心治療，治療期間因肺炎併發呼吸衰竭而做氣管切開術，在急性症狀獲得控制後，即轉入某醫院護理之家，因NF患者在護理之家較少見，照護人員對此症缺乏相關照護經驗，加上個案情緒和家人對疾病認知不足等問題，增加了照護的困難度，如何透過團隊合作，給予個案除了生理上的照護外，還有心理評估與支持，以期未來能自我照顧並重新加入社會，以及給予家屬建議與協助，是本文探討的重點。

並列摘要

The neurofibromatosis (NF) is a genetic disorder that primarily affects nervous system. These tumors are developed by proliferation of nerve cells and are often accompanied with peripheral tissue's proliferation and deformities such as skin changes and bone deformities. Currently, there is no curative treatment. We present a case of a 28-year-old woman with NF. She suffered from dysphagia and dysarthria because her cranial nerves were compressed by internal carotid aneurysms. She was sent to a medical center to receive further management. Tracheostomy was performed due to pneumonia-related respiratory failure during that admission. She was transferred to a nursing home as soon as the above problems were under control. However, some difficulties arose in the nursing home as medical staff there barely had the experience and expertise to take care of this disease. Besides, the patient's low mood and her family's limited knowledge and unrealizable expectation compounded the difficulties to provide her with total care treatment. Biopsychosocial approach and teamwork effort from medical professional and family members are essential for the successful treatment of this disease.

並列關鍵字

neurofibromatosis ； nursing home ； teamwork care