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研究生:田月玄
研究生(外文):Yueh-Hsuan Tien
論文名稱:女性癲癇患者之生病敘說
論文名稱(外文):The Illness Narratives of Women with Epilepsy
指導教授:許敏桃許敏桃引用關係
指導教授(外文):Min-Tao Hsu
學位類別:碩士
校院名稱:高雄醫學大學
系所名稱:護理學研究所碩士班
學門:醫藥衛生學門
學類:護理學類
論文種類:學術論文
論文出版年:2005
畢業學年度:93
語文別:中文
論文頁數:132
中文關鍵詞:癲癇慢性病女性生病敘說父權文化污名
外文關鍵詞:womenillness narrativeschronic illnessepilepsystigmapatriarchy culture
相關次數:
  • 被引用被引用:6
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  • 收藏至我的研究室書目清單書目收藏:8
本研究透過生病敘說的質化方式,旨在探索台灣文化脈絡下女性癲癇患者之生病經驗及其自我的詮釋為何。共針對十位女性癲癇患者進行深度訪談,並以敘說分析法進行資料分析,藉由她們的敘說,以瞭解參與者病後的生活世界樣貌。而研究結果發現,女性癲癇患者的生病故事,展現了「『自我—他人』映照的生病經驗」與「『命定—認命』的生病適應歷程」兩大主軸。
由於癲癇疾病的社會污名及華人宗族主義賦予女性傳宗接代的角色責任,使得女性癲癇患者不斷受苦於來自他人對身為「正常」女人的質疑眼光與個人對女人角色未完成的遺憾。另一方面,女性癲癇患者在生病過程裡,亦不斷地來回掙扎於自我與疾病意義之間,努力找出一種與疾病相處的方式,重新建構自己的生活圖象。本研究結果顯示,女性癲癇患者不僅要面對疾病本身,更需承受來自傳統文化生育子嗣與社會刻板印象的重重壓力。研究者建議護理人員在面對女性癲癇患者之照護時,應將文化衝擊列入考量。
Based upon narratives analysis, the purpose of this study was to explore the illness experience of the women with epilepsy and their interpretation of life after being diagnosed epilepsy in Taiwanese cultural context. Using in-depth interviews, ten women with epilepsy were interviewed to obtain the narratives data. Two identified story lines were: “comparing self with the other” and “adapting fate of living with epilepsy”.
Both the social stigma of epilepsy and the cultural ideology of women were identified as major issues of their life world, their interpretation reveal the suffering caused by others’ social perspectives of such stigmatized disease and by themselves for unfulfilled women’s roles. In addition to that, they struggled between selves and disease for finding out how to live with the illness. As the research findings implicated, the women with epilepsy were not only facing the disease itself, but also experiencing lots of stress from Chinese’s traditional culture which women were required to give birth a male family heir and social stereotype of epilepsy. The researcher suggests that these cultural impacts should be incorporated into nursing assessment and treatment practices.
目 錄
第一章 緒論……………………………………………….....1
第一節 研究背景與重要性……………………………………....1
第二節 研究目的………………………………………………....3

第二章 文獻查證………………………………………….....4
第一節 癲癇之概述……………………………………………....4
第二節 癲癇對患者生活世界之影響…………………………....9
第三節 女性與癲癇關係之論述………………………………..17

第三章 研究方法…………………………………………...21
第一節 生病敘說………………………………………………..21
第二節 研究對象………………………………………………..25
第三節 研究過程………………………………………………..25
第四節 資料處理………………………………………………..30
第五節 資料分析………………………………………………..31
第六節 研究嚴謹度……………………………………………..34
第七節 研究倫理………………………………………………..35

第四章 自我的展現:癲癇女性的生病敘說………………36
第一節 走出一片天—鄧姐……………………………………..36
第二節 囚困的籠中鳥—宜靜…………………………………..49
第三節 拼命三郎—文慧………………………………………..60
第四節 小結……………………………………………………..68

第五章 研究結果…………………………………………...69
第一節 研究參與者基本資料分析……………………………..69
第二節 資料分析與詮釋………………………………………..72
主軸一、 「自我—他人」映照的生病經驗………………72
主軸二、 「命定—認命」的生病適應歷程………………87
第三節 小結……………………………………………………101
第六章 討論........………………………………………….102
第一節 癲癇女性的生病適應歷程……………………………102
第二節 社會污名下的生病經驗………………………………107
第三節 生病經驗中的女性角色………………………………109

第七章 結論與建議..……………………………………...112
第一節 結論……………………………………………………112
第二節 研究限制………………………………………………113
第三節 護理應用與建議………………………………………115
第四節 研究者省思……………………………………………119

參考資料..…………………………………………………...122
中文部分…………………………………………………………122
英文部分…………………………………………………………125
附件一 研究說明書…………………………………………………131
附件二 研究參與者基本資料表……………………………………132


圖表目次
表一 癲癇發作的國際分類……………………………………………7
表二 研究參與者基本資料表………………………………………..71
中文部分:
方真真(2003).身體的印記:受虐婦女的生命敘說.未發表之碩士論文.高雄:高雄醫學大學性別研究所。
王煇雄(2001).癲癇與女性.跳躍的音符兒童發展協進會年刊,45-48。
王煇雄(2000b).吃好癲癇—〝生酮飲食〞專題討論.跳躍的音符兒童發展協進會年刊,27-28。
王琳華(1998).曾有不孕症婦女孕期的生活經驗.未發表之碩士論文.台北:國防醫學院護理學研究所。
朱迺欣(2002).癲癇.於張寓智編著,臨床神經學(pp. 185-193).台北:合記。
朱復禮(1983a).癲癇之現代醫學觀.臨床醫學,12(3),193-196。
沈秀婷(1998).藥物治療癲癇病患生活品質及相關因素之探討.未發表之碩士論文.台北:國防醫學院護理學研究所。
沈志仁(1989).精神病患者家屬壓力源、應對策略與健康狀況的探討.未發表之碩士論文,台北:台灣大學護理學研究所。
林鍾淑敏(2002).走在荊棘路上—精神分裂症青少年病患的疾病經驗與社會適應歷程.未發表之碩士論文.台北:台灣大學社會學研究所。
林耀盛、吳英璋(2001).慢性病患者的意義建構及其行動策略:以糖尿病為例.中華心理衛生學刊,14(4),31-58。
林耀盛、吳英璋(1997).慢性病的個人控制觀:自主與依賴之間.應用心理研究,3,105-128。
胡幼慧(2002).質性研究的分析與寫成.於胡幼慧主編,質性研究—理論、方法及本土女性研究實例(159-170頁).台北:巨流。
侯嘉音(2001).子宮內膜異位女性的生活經驗.未發表之碩士論文.高雄:高學醫學大學護理學研究所。
施茂雄(1998).癲癇不再發作.台北:宏欣文化。
施美雲(1990).探討一位癲癇病人的心理反應.護理雜誌,37(4),59-64。
洪祖培(1983).臨床癲癇學.台北:橘井。
姚俊興(2002,10月).癲癇婦女抗癲癇藥物治療問題.於財團法人鄭德齡醫學發展基金會主辦,第六次學術研討會—婦女與癲癇.高雄:榮民總醫院。
徐瑩薇(2000).精神分裂症居家病患父母避免病患再住院之照顧經驗.未發表之碩士論文,台北:台灣大學護理學研究所。
唐子俊(1995).精神分裂病「恥辱感」—問卷的發展及相關變項的前趨研究.未發表之碩士論文.高雄:高雄醫學院行為科學研究所。
陳瑞珍(2002).認識癲癇.台北:台灣癲癇之友協會。
許敏桃(2001).台灣老年婦女心理社會發展.護理雜誌,48(5),5-10。
陳麗娟(2001).癲癇青少年生活品質及相關因素之探討.未發表之碩士論文.台北:台北醫學院護理學研究所。
陳秀芳、蔡芸芳、賴其萬、范德鑫(2001).癲癇病患生活品質之探討.慈濟醫學,13(1),47-54。
連淑玲(1996).癲癇症患童對其疾病認知及學習需求探討.未發表之碩士論文.台北:國防醫學院護理學研究所。
曾元孚、張宏旭(2002).癲癇的分類與診斷.當代醫學,29(1),38-45。
黃士滋(1995).癲癇病人的生活經驗.未發表之碩士論文.台北:國防醫學院護理學研究所。
黃隸棟、沈力揚(1983).癲癇之神經外科手術治療.臨床醫學,12(3),272-274。
張秀玉(1997).初次接受與重複接受人工生殖科技治療不孕症夫妻之心理社會反應.未發表之碩士論文.台中:中山醫學院醫學研究所。
張珣(1989).疾病與文化.台北:稻香。
楊雅淑(1998).癲癇患者社會支持與安適狀態之相關性探討.未發表之碩士論文.台北:國立陽明大學護理學研究所。
楊美賞、鄭美蕙、李美宜(1986).運用華盛頓癲癇心理社會量表對癲癇病人心理社會適應問題之評估.高雄醫學科學雜誌,2,33-42。
蔣欣欣、盧孳艷(1996).健康與疾病的文化觀及現象分析.護理雜誌,43(4),42-48。
賴向榮(2002,10月).女性癲癇之處理建議.於財團法人鄭德齡醫學發展基金會主辦,第六次學術研討會—婦女與癲癇.高雄:榮民總醫院。
賴向榮(1989).月經週期對女性癲癇病患影響之研究.未發表之碩士論文.高雄:高雄醫學院醫學研究所。
謝玉玲(1996).癲癇青少年生活品質內涵初探:主觀性生活情境之研究.未發表之碩士論文.桃園:長庚醫學院護理學研究所。
闕清模(1985).癲癇病患的心理社會適應問卷調查.醫學研究,6,165-183。
闕清模(1983).癲癇病患的心理社會適應問卷調查.醫學研究,12(3),275-281。
顏芳慧(2002).初次急性心肌梗塞婦女心臟病發作的生病經驗.未發表之碩士論文.高雄:高雄醫學大學護理學研究所。
關尚勇(2001).最新癲癇病人手冊.台北:藝軒。
蘇逸人(2002).疾病覺知、疾病控制信念與社會污名:精神分裂症患者疾病心理適應之心理社會因應模式.未發表之碩士論文.台北:台灣大學心理學研究所。
蘇明勳(1997).癲癇.於吳進安編著,基礎神經學(pp. 97-112).台北:合記。

英文部分:
Austin, J. K., Macleod, J., Dunn, D. W., Shen, J., & Perkins, S. M. (2004). Measuring stigma I children with epilepsy and their parents: Instrument development and testing. Epilepsy & Behavior, 5(4), 472-482.
Austin, J. K., Shafer, P. O., & Deering, J. B. (2002). Epilepsy familiarity, knowledge and perceptions of stigma: Report from a survey of adolescents in the general population. Epilepsy & Behavior, 3(4), 368-375.
Baker, G. A. (2002). The psychosocial burden of epilepsy. Epilepsia, 43(Suppl. 6), 26-30.
Baker, G. A., Brooks, J., Buck, D., & Jacoby, A. (1999). The stigma of epilepsy: A European perspective. Epilepsia, 41(1), 98-104.
Baker, G. A., Jacoby, A., & Chadwick, D. W. (1996). The association of psychopathology in epilepsy: A community study. Epilepsy Research, 25(1), 29-39.
Barrett, C., & Richens, A. (2003). Epilepsy and pregnancy: Report of an epilepsy research foundation workshop. Epilepsy Research, 52(3), 147-187.
Beghi, E., & Annegers, J. F. (2001). Pregnancy registries in epilepsy. Epilepsia, 42(11), 1422-1425.
Bell, G. S., Nashef, L., Kendall, S., Solomon, J., Poole, K., Johnson, A. L., Moran, N. F., McCarthy, M., McCormick, D., Shorvon, S. D., & Sander, J.W. (2002). Information recalled by women talking anti-epileptic drugs for epilepsy: A questionnaire study. Epilepsy Research, 52(2), 139-146.
Baumann, R., Wilson, J., & Wiese, H. (1995). Kentuckians: Attitudes toward children with epilepsy. Epilepsia, 36, 1003-1008.
Blumer, D., Montouris, G., Davies, K., Wyler, A., Phillips, B., & Hermann, B. (2002). Sucide in epilepsy: Psychopathology, pathogenesis, and prevention. Epilepsy & Behavior, 3(3), 232-241.
Bourgeois, F. D. (1996). Behavioral and social therapy. In S. Wallace (Ed.), Epilepsy in Children (5th ed., pp.557-559). London: Chapman &Hall.
Buck, D., Barker, G. A., Jacoby, A., & Smith, D. F. (1997). Patients experiences of injury as a result of epilepsy. Epilepsia, 38(4), 439-444.
Canger, R., Battino, D., Canevini, M. P., et al. (1999). Malformations in offspring of women with epilepsy: A prospective study. Epilepsia, 40, 1231-1236.
Canterll, D. C., Riela, S. J., Ramus, R., & Riela, A. R. (1997). Epilepsy and pregnancy: A study of seizure frequency and patient demographics [Abstract]. Epilepsia, 38, 231.
Chaplin, J. E., Wester, A., Tomson, T. (1998). Factors associated with the employment problems of people with established epilepsy. Seizure, 7, 299-303.
Choi, S. J., Hong, S. B., & Seo, D. W. (2001). Stigma and quality of life in epilepsy. Epilepsia, 42, 1628.
Commission on Classification and Terminology of the International League Against Epilepsy. (1981). Proposal for revised clinical and electroencephalographic classification of epileptic seizures. Epilepsia, 22, 489-501.
Craig, J., Morrison, P., Morrow, J., & Patterson, V. (1999). Failure of periconceptual folic acid to prevent a neural tube defect in the offspring of a mother taking sodium valproate. Seizure, 8(4), 253-254.
Cramer, J. A., Westbrook, L. E., Devinsky, O., Perrine, K., Glassman, M.B., & Camfield, C. (1999). Development of the Quality of Life in Epilepsy Inventory for Adolescents: The QOLIE-AD-48. Epilepsia, 40, 1114-1121.
Crawford, P., & Lee, P. (1999). Gender difference in management of epilepsy--what women are hearing. Seizure, 8(3), 135-139.
Crawford, P., Appleton, R., Betts, T., Duncan, J., Guthrie, E., & Morrow, J. (1999). Best practice guidelines for the management of women with epilepsy. The women with Epilepsy Guidelines Development Group. Seizure, 8(4), 201-217.
Danesi, M. A. (1984). Patient perspectives on epilepsy in a developing country. Epilepsia, 25(2), 184-190.
De Boer, H. M. (1995). Epilepsy and society. Epilepsia, 36(Suppl. 1), S8-S11.
Devinsky, O., Westbrook, L. E., Cramer, J. A., Glassman, M.B., Perrine, K., & Camfield, C. (1999). Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia, 40, 1715-1720.
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