The Changing Narratives of Death, Dying, and HIV in the United Kingdom

Abstract

Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.