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題名 | 照顧一位法布瑞氏症併視神經損傷案童之護理經驗=The Nursing Experience of Caring a Child with Ischemic Optic Neuropathy Associated with Fabry Disease |
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作者 | 戴綾儀; 葉燕芬; | 書刊名 | 志為護理 |
卷期 | 14:1 2015.02[民104.02] |
頁次 | 頁85-94 |
分類號 | 419.75 |
關鍵詞 | 法布瑞氏症; 視神經病變; 家庭韌力; 低視能照護; Fabry disease; Family resilience; Low vision care; Optic neuropathy; |
語文 | 中文(Chinese) |
中文摘要 | 法布瑞氏症是罕見疾病,臨床少見造成視神經損傷案例,因案童及案兄皆罹患此病,造 成家庭衝擊及父母自責,引發筆者寫作動機。個案為12歲法布瑞氏症病童,於2012年9月 19日至10月4日照護期間,透過會談、傾聽、觀察及照護等方式收集資料,確認有恐懼、 高危險性傷害-跌倒、家庭因應能力失調及自我照顧能力缺失等健康問題。案童視力突然 減退心生恐懼,案家因經濟壓力一度拒絕高壓氧治療,透過主動關懷,提供疾病相關知 能,減輕案童家屬焦慮、強化支持系統,並請社工提供經濟協助,順利接受治療,重拾單 眼視力。運用低視能照護,協助案童及家屬正視低視力缺憾,面對疾病進而提升復原力。 |
英文摘要 | Ischemic optic neuropathy, albeit rare, is a complication of Fabry disease. This case was a 12-year-old child with Fabry disease. Nursing care was provided between September 19th and October 4th 2012. The data was collected through interviews, attentive listening, observation, and nursing care. Assessing the patient have identified problems including fears, falls, family coping and self-care deficit. At first the family refused hyperbaric oxygen therapy due to fear and financial burden. Through proactive care, provision of disease-related knowledge, alleviating family anxiety, strengthening family support systems, and financial help from social workers, the child finally received treatment and monocular vision was restored. I also used low vision care measures to help children and their families face impaired vision, and raise the resilience in coping with the disease. |
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