全身性紅斑性狼瘡女性患者生涯挑戰與因應經驗之研究

A Study of Career Challenges and Coping Experiences of Women with Systemic Lupus Erythematosus

本研究目的在於探討全身性紅斑性狼瘡女性患者面臨生涯挑戰及因應的經驗。本研究透過親友介紹、研究參與者介紹、電子郵件、網路平臺等方式尋找研究參與者，共訪談四位全身性紅斑性狼瘡女性患者，兩位年齡在30歲以下，兩位在40歲以下；病齡在6-10年之間及15-20年之間者各一位，另兩位病齡則在10-15年之間。本研究以「主題分析法」進行文本分析，研究結果發現：（1）不同的發病時間及患者病程起伏的疾病特性對其生涯發展有不同的影響；（2）當對健康的考量優先於個人能力時，生涯角色目標的追求與調整方式影響患者的發展樣貌；（3）疾病的因應是由穩定病情、重拾對生活的掌握到接納自我。研究建議女性患者應了解疾病資訊、學習健康管理、調適心理、生活與工作上的改變，女性在維持病情的穩定之下，亦能正面積極與疾病共舞，追求個人生涯目標。

The purpose of this study was to explore the career challenges and their coping experiences of women with Systemic Lupus Erythematosus (SLE). This study recruited participants through the referral of relatives, friends, and research participants by e-mails and online platforms. Four women with SLE were interviewed, two under 30 years old and two under 40. Two of them with history of SLE ranged between 6-10 and 15-20 years, and the other two were between 10-15 years. Text analysis was conducted using the “thematic analysis method”. The results of the study were: (a) different onset timing and the undulating disease course in SLE tend to have different effect on the career development of women with SLE. (b) when health is taken into account prior to the capacity, SLE women’s adjustment to illness shapes their career development style. (c) their coping involved three stages: trying to handle illness, reregulating life, and self-acceptance. Based on the findings, suggestions were proposed for field workers to help SLE women understand the illness information, face illness and learn health management, manage their emotions, and adapt to the changes in their life. In addition, fleld workers can help SLE women plan and pursue their career goals and development under the circumstance of their illness.