Unable to be a Human Being in Front of Other People: A Qualitative Study of Self-Isolation Among People Living with HIV/AIDS in China

In China, acute stigma accompanying an HIV diagnosis can lead to self-isolation. In a cultural setting where family relationships are highly valued and contribute critically to well-being, such self-isolation can thwart HIV self-management and engagement in medical care, and so heighten risk for health disparities. To understand this phenomenon, we conducted individual in-depth interviews with 34 persons living with HIV/AIDS (PLwHA) in Shanghai and Beijing. Inductive content analysis revealed a range of forms of self-isolation motivation, beliefs, and behaviors influenced by: 1) internalized stigma and desire to avoid discrimination; 2) HIV-related factors such as HIV knowledge and disease progression; and 3) familial factors such as a sense of responsibility and family members’ reactions. Based on a proposed framework centering on dialectical family influences (whereby PLwHA are pushed away from, yet pulled toward the family fold), implications for provision of multidisciplinary care in medical settings are considered, including culturally appropriate strategies to decrease health disparities.