‘Dying from’ to ‘living with’: Framing institutions and the coping processes of African American women living with HIV/AIDS

How do HIV-positive individuals transition from believing and behaving as though they have a ‘death sentence’ to interpreting and coping with HIV as a chronic but manageable illness? Using interview data collected from 30 HIV-positive African American women beginning in 2005, we reveal how and why interactions with non-profit and government institutions help to explain variation between those who thrive and those who do not following an HIV diagnosis. We argue that ‘framing institutions’ shape the form and tenor of coping trajectories by offering initial information about one's HIV status, a conceptual framework for understanding what it means to have HIV, language to talk about one's condition, and resources to begin restructuring one's life in the wake of a diagnosis. Ultimately, we highlight how a diverse array of non-profit and government institutions not only play a critical part in helping women cope with HIV but also renegotiate their self-conceptions as black women in the wake of receiving another stigmatizing social marker. In short, organizational ties shape women's movement from beliefs and behaviors that suggest that they are ‘dying from’ this disease to attitudes and actions consistent with the notion that they can ‘live with’ HIV. ► Adoption of healthy behaviors to fight HIV cannot be fully explained by focusing on individual or environmental factors. ► The ‘framing institution’ conceptualizes how people, particularly stigmatized populations, manage chronic illness. ► These institutions offer a conceptual framework and other resources to shape how individuals interpret an HIV diagnosis. ► We see the most risky and destructive attitudes and behaviors among women who rarely draw on institutions to cope.