台灣文化脈絡下的女性癲癇患者生病經驗

The Illness Experience of Women with Epilepsy in a Taiwanese Cultural Context

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」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。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。

The purpose of this study was to explore in a Taiwanese cultural context and on the basis of analysis of narrative data the illness experience of women with epilepsy and their interpretation of life after being diagnosed with epilepsy. The narrative data were obtained by in-depth interviews of ten women with epilepsy. The theme of ”comparing oneself with others” emerged. Both the social stigma of epilepsy and the cultural ideology of women were identified as major issues of their life world, their interpretation revealing the suffering caused by others' social perspectives on such a stigmatized disease and their own feelings of not fulfilling the woman's role. As the research findings indicate, the women not only faced epilepsy itself, but also substantial stress from Chinese traditional culture's demand that women produce a male family heir, and from the social stereotype attached to epilepsy. The researcher recommends that these cultural impacts be incorporated into nursing assessment and treatment practices.