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无论疾病还是健康:一项关于感染艾滋病毒的中国女性如何应对耻辱感并在婚姻/伴侣关系中协商披露病情的定性研究。

In sickness and in health: a qualitative study of how Chinese women with HIV navigate stigma and negotiate disclosure within their marriages/partnerships.

作者信息

Chen Wei-Ti, Shiu Cheng-Shi, Simoni Jane M, Zhao Hongxin, Bao Mei Juan, Lu Hongzhou

机构信息

School of Nursing, Yale University, New Haven, CT, USA.

出版信息

AIDS Care. 2011 Jun;23 Suppl 1(Suppl 1):120-5. doi: 10.1080/09540121.2011.554521.

Abstract

In China, there are currently an estimated 180,000 women between 16 and 45 years of age living with HIV. However, we know very little about their lived experiences. Given the spread of the AIDS epidemic in China and the burden it exerts on quality of life, there is an urgent need to understand how HIV affects Chinese women, particularly in the context of their marriages. How do they negotiate the extreme stigma of their illness in making decisions about disclosure and social support, especially in the context of their family life? We recruited 26 Chinese women with HIV in Beijing and Shanghai for in-depth interviews employing a phenomenological approach. We examined the process and outcomes of disclosure within the course of the women's search for social support. Women in HIV-discordant relationships often experienced a termination of their marriage after disclosure, yet others exhibited remarkable resilience, finding new strength through the challenge of their illness. Findings underscore the need for accessible and culturally acceptable interventions for Chinese women with HIV who face considerable stigma in their search for support.

摘要

在中国,目前估计有1.8万名16至45岁的女性感染了艾滋病毒。然而,我们对她们的生活经历知之甚少。鉴于艾滋病在中国的传播及其对生活质量造成的负担,迫切需要了解艾滋病毒如何影响中国女性,尤其是在婚姻背景下。在做出关于披露病情和寻求社会支持的决定时,她们如何应对疾病带来的极端耻辱感,特别是在家庭生活背景下?我们在北京和上海招募了26名感染艾滋病毒的中国女性,采用现象学方法进行深入访谈。我们研究了这些女性在寻求社会支持过程中披露病情的过程和结果。处于艾滋病毒不一致关系中的女性在披露病情后往往经历婚姻终止,但其他女性则表现出非凡的适应力,通过疾病带来的挑战找到新的力量。研究结果强调,对于在寻求支持时面临相当大耻辱感的感染艾滋病毒的中国女性,需要提供可及且符合文化习惯的干预措施。

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