题名

全身性紅斑性狼瘡女性患者生涯挑戰與因應經驗之研究

并列篇名

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

作者

曾馨儀(Hsin-Yi Tseng)；黃素雲(Su-Yun Huang)

关键词

全身性紅斑性狼瘡 ； 女性患者 ； 生涯挑戰 ； 因應經驗 ； systemic lupus erythematosus ； SLE women ； career challenges ； coping

期刊名称

臺灣諮商心理學報

卷期/出版年月

7卷1期（2019 / 11 / 01）

页次

1 - 34

内容语文

繁體中文
中文摘要

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。
英文摘要

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, field workers can help SLE women plan and pursue their career goals and development under the circumstance of their illness.
主题分类 社會科學 > 心理學
参考文献
  1. Chuang, T. H.,Lin, K. C.,Gau, M. L.(2010).Validation of the braden self-help model inwomen with systemic lupus erythematosus.Jounral of Nursing Research,18,206-213.
    連結：
  2. 翁嘉英,吳振能,吳英璋(2003)。「病人角色」的抗拒與接受：接受血液透析治療患者的心理調適歷程。中華心理衛生學刊，16，49-82。
    連結：
  3. Al Dhanhani, A. A.,Gignac, M. A. M.,Su, J.,Frotin, P. R.(2009).Work disability in systemic lupus erythematosus.Arthritis & Rheumatism,61,378-385.
  4. Baker, K.,Pope, J.(2009).Employment and work disability in systemic lupus erythematosus: A systematic review.Rheumatology,48,281-284.
  5. Clowse, M. E.,Wallace, D. J.,Weisman, M.,James, A.,Criscione-Schreiber, L. G.,Pisetsky, D. S.(2013).Predictors of preterm birth in patients with mild systemic lupus erythematosus.Annals of Rheumatic Diseases,72(9),1536-15399.
  6. Goodman, J.,Schlossberg, N. K.,Anderson, M. L.(2006).Counseling adults in transition: Linking practice with theory.New York, NY:Springer.
  7. Klippel, J.(Ed)(2008).Primer on the rheumatic diseases.New York, NY:Springer.
  8. Mazzoni, D.,Cicognani, E.(2014).Sharing experiences and social support requests in an internet forum for patients with systemic lupus erythematosus.Journal of Health Psychology,19,689-696.
  9. Mok, C. C.,Cheung, M. Y.,Ho, L. Y.,Yu, K. L.,To, C. H.(2008).Risk and predictors of work disability in Chinese patients with systemic lupus erythematosus.Lupus,17,1103-1107.
  10. Panopalis, P.,Petri, M.,Manzi, S.,Isenberg, D. A.,Gordon, C.,Senécal, J. L.,Clarke, A. E.(2007).The systemic lupus erythematosus Tri-Nation study: Cumulative indirect costs.Arthritis Rheum,57,64-70.
  11. Peart, E.,Clowse, M.(2014).Systemic lupus erythematosus and pregnancy outcomes: An update and review of the literature.Current Opinion in Rheumatology,26(2),118-123.
  12. Savickas, M. L.(2005).The theory and practice of career construction.Career development and counselling: Putting theory and research to work,Hoboken, NJ:
  13. Schattner, E.,Shahar, G.,Lerman, S.,Shakar, M. A.(2010).Depression in systemic lupus erythematosus: The key role of illness intrusiveness and concealment of symptoms.Psychiatry,73,329-340.
  14. Snyder, C. R.,Rand, K. L.,Sigmon, D. R.(2002).Hope theory: A member of the positivepsychology family.Handbook of positive psychology,New York, NY:
  15. Sohng, K. Y.(2003).Effects of a self-management course for patients with systemic lupus erythematosus.Journal of Advanced Nursing,42,479-486.
  16. Super, D. E.(1990).A life-span, life-space approach to career development.Career choice and development: Applying contemporary theory to practice,San Francisco:
  17. Super, D. E.(1980).A life-span, life-space approach to career development.Journal of Vocational Behavior,16,282-298.
  18. Thomas, D. E.(2014).The lupus encyclopedia: A comprehensive guide for patients and families.Baltimore, MD:Johns Hopkins University Press.
  19. Vinet, E.,Clarke, A. E.,Gordon, C.,Urowitz, M. B.,Hanly, J. G.,Pineau, C. A.,Bernatsky, S.(2011).Decreased live births in women with systemic lupus erythematosus.Arthritis Care Research,63,1068-1072.
  20. Yelin, E.,Trupin, L.,Katz, P.,Criswell, L.,Yazdany, J.,Gillis, J.,Panopalis, P.(2007).Work dynamics among persons with systemic lupus erythematosus.Arthritis & Rheumatism,57,56-63.
  21. 林文香(2000).蝶舞.臺北市:自然風.
  22. 林文香,夏萍絗,楊文山,洪志美(1999)。全身紅斑性狼瘡及類風濕性關節炎女病患的身體、心理、社會功能探討。護理研究，7，261-274。
  23. 林美麗(2014).美麗的天使：重症紅斑性狼瘡女兒帶來的生命禮物.臺中市:白象文化.
  24. 胡月娟,林豐裕(2005)。慢性病患之疾病衝擊、健康行為與因應結果之模式檢定。實證護理，1，140-147。
  25. 高淑清(2008).質性研究的 18 堂課：首航初探之旅.臺北市:麗文.
  26. 蔡智能,劉明輝(2009).過敏免疫全書.臺北市:原水文化.
  27. 蔡肇基(2008).全身性紅斑性狼瘡：一群病友的生命故事.臺北市:健康世界.
  28. 衛生福利部中央健康保險署（2011）。重大傷病範圍。2014 年 9 月 5 日取自 http://www.nhi.gov.tw/webdata/webdata.aspx?menu=18&menu_id=683&webdata_id=3471&WD_ID=760
  29. 謝水南（譯）,Fraenkel, J.R.,Wallen, N.E.(2008).教育研究法：研究設計實務.臺北市:心理.
print cancel