女性癲癇患者之生病敘說

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。

關鍵字

癲癇；慢性病；女性；生病敘說；父權文化；污名

並列摘要

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.