臺灣博碩士論文加值系統

癲癇是常見的慢性神經系統疾病，當父母面對孩子罹患癲癇症時，除了要協助病童正常的發展外，還要處理因其疾病所導致的生理、心理和社會等方面的適應問題。有60至70%的癲癇患者在能服用抗癲癇藥物之下獲得穩定控制，如能在抗癲癇藥物控制下有兩年以上沒有癲癇發作，則可考慮停止抗癲癇藥物治療。當父母在面對癲癇病童停止抗癲癇藥物治療過程，父母的感受及如何調整家庭的生活型態是目前文獻較少被提及的。因此，本研究之目的為瞭解癲癇症兒童與青少年之父母對停止抗癲癇藥物治療之相關經驗。
本研究採質性研究設計，以立意取樣選取十七位癲癇症兒童及青少年的父母來進行深度訪談，其中包含十三位母親和四位父親，並透過內容分析將父母照顧癲癇症兒童與青少年之經驗歸納為五個主題，包含「從減藥開始的期待與喜悅」、「心存憂慮與不確定感」、「在約束與鬆綁間的生活抉擇」、「親子間對藥物管理的磋商」、「病情保密或揭露的兩難」。臨床醫護人員透過瞭解癲癇症兒童和青少年之父母於孩童停止抗癲癇藥物治療之感受，於日後接觸停止抗癲癇藥物治療之癲癇症孩童父母時，可主動提供衛教資訊並給予關懷與心理支持，進而協助其調適停止藥物治療的生活。

Epilepsy is a chronic neurological disease. Parents of epileptic children not only have to promote the childrens’ development but also need to manage the adjustment issues resulting from the disease. It is estimated that 60-70% of people with the epilepsy may become seizure-free for at least 2 years and be faced with the decision to withdraw from their antiepileptic drugs (AEDs). It is unknown how the process of discontinuing antiepileptic drugs affects parents and family life style. Thus, the purpose of this study was to explore the experience of parents with seizure-free school-age children and adolescents who discontinued antiepileptic drug treatment.
A qualitative study was designed and purposive sampling was used. Thirteen mothers and four fathers of the epileptic child were interviewed in depth. By using content analysis, five themes were generated including: 1) merrily expecting discontinuation of AEDs, 2) mixed feelings of worry and uncertainty, 3) reset family rules and expectation for child, 4) negotiating medication management with child, and 5) willingness to disclose or conceal epilepsy history. Through the findings of this study, the medical staff can understand the perceptions of these parents, provide them support and adequate care, and assist the family adjustment during the period of AED discontinuation.

中文摘要................................................ i
英文摘要................................................ ii
目 次................................................. iii
表 次................................................. v
圖 次................................................. vi
第一章 緒論..............................................1
第二章 文獻探討..........................................4
第一節 癲癇症概論........................................4
第二節 兒童中期至青少年期發展特性與家庭生命週期發展..... 9
第三節 癲癇症對兒童與青少年及其家庭的影響...............12
第四節 癲癇症停止藥物治療相關研究.......................16
第三章 研究方法.........................................19
第一節 研究設計.........................................19
第二節 研究參與者的選取.................................20
第三節 研究工具.........................................20
第四節 資料收集過程.....................................21
第五節 資料分析.........................................22
第六節 嚴謹度...........................................23
第七節 研究倫理考量.....................................25
第四章 研究結果.........................................27
第一節 受訪者基本資料描述...............................27
第二節 癲癇症兒童和青少年之父母對停止藥物治療之經驗.....29
第五章 討論.............................................48
第一節 父母於病童停藥過程的心態調適.....................48
第二節 父母在停藥過程中對於病童的生活管理...............50
第三節 父母對病情告知的意願.............................51
第六章 結論與建議.......................................54
第一節 結論.............................................54
第二節 研究建議.........................................55
第三節 研究限制.........................................58
參考文獻.................................................59
中文部分.................................................59
英文部分.................................................61
附錄.....................................................67
附錄一、2010年國際抗癲癇組織之癲癇症候群分類.............67
附錄二、常見抗癲癇藥物及其副作用.........................69
附錄三、基本資料表.......................................72
附錄四、訪談指引.........................................73
附錄五、病歷查閱.........................................74
附錄六、受試者同意書.....................................75

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