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

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.

Keywords:

• women
• relationship
• marriage
• HIV
• support

Acknowledgements

This publication resulted (in part) from research supported by the University of Washington Center for AIDS Research (CFAR), an NIH-funded program (P30 AI027757), which is supported by the following NIH Institutes and Centers (NIAID, NCI, NIMH, NIDA, NICHD, NHLBI, and NCCAM) through an international pilot grant awarded to Dr Wei-Ti Chen and by the University of Washington's (UW) School of Nursing Research & Intramural Funding Program (RIFP). Also, this study was partially supported by grant number R34-MH074364 and R34-MH074364-S1 from the US National Institute of Mental Health (NIMH) to Dr Simoni. We would also like to acknowledge Yinyin Tu, Xiaoling Wang, Ren-Fang Zhang, Li-Jun Zha, Cheng-En Pan, the Association for the Benefit of PLWHA (Beautiful Life-Shanghai), and all of the study participants.