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《大开眼戒》:澳大利亚丙型肝炎女性患者的故事

"Eyes Wide Shut": narratives of women living with hepatitis C in Australia.

作者信息

Crockett Belinda, Gifford Sandra M

机构信息

School of Health and Social Development, Deakin University, Burwood, Australia.

出版信息

Women Health. 2004;39(4):117-37. doi: 10.1300/J013v39n04_07.

Abstract

Hepatitis C is the leading notifiable infectious disease in Australia and in the last few years, the number of new diagnoses among young women is beginning to outnumber men. For many, infection with hepatitis C virus (HCV) results in a chronic condition, which, in addition to a range of symptoms, carries with it the stigma attached to injecting drug use. Despite the growing prevalence of HCV, women's health has barely begun to address the gender specific impact of this illness on women. We report the results of a qualitative study of young women's experiences of living with HCV with a specific focus on the meaning of this condition and its impact on their lives. In 1999--2000, twenty-five in-depth interviews were conducted with women between the ages of 18 and 43 years, who were current or past injecting drug users and who had been diagnosed with HCV. One focus group discussion was held with health workers who provide treatment and care to this population. A number of key issues were identified that women believed impacted negatively on their lived experiences of HCV. Of most concern was the meaning of HCV and the social stigma attached. Stigma coupled with the lack of knowledge and awareness among health professionals and the high cost of treatment contributed to women's reluctance to seek support and care. HCV has yet to be taken up by the women's health movement as a key issue, especially for young women and we argue that this trend needs to be reversed.

摘要

丙型肝炎是澳大利亚报告最多的传染病,在过去几年中,年轻女性的新诊断病例数开始超过男性。对许多人来说,感染丙型肝炎病毒(HCV)会导致慢性病,除了一系列症状外,还带有与注射吸毒相关的污名。尽管HCV的患病率不断上升,但妇女健康几乎尚未开始关注这种疾病对女性的性别特定影响。我们报告了一项针对年轻女性感染HCV经历的定性研究结果,特别关注这种疾病的意义及其对她们生活的影响。1999年至2000年期间,对年龄在18至43岁之间、目前或曾经注射吸毒且已被诊断感染HCV的女性进行了25次深入访谈。与为这一人群提供治疗和护理的医护人员进行了一次焦点小组讨论。确定了一些关键问题,女性认为这些问题对她们感染HCV的生活经历产生了负面影响。最令人担忧的是HCV的意义以及与之相关的社会污名。污名加上医护人员缺乏知识和认识以及治疗费用高昂,导致女性不愿寻求支持和护理。HCV尚未被妇女健康运动视为一个关键问题,尤其是对年轻女性而言,我们认为这种趋势需要扭转。

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