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.
Highlights
From the start of the HIV epidemic in the United Kingdom in the early 1980s, a strong association between infection and death was established in the public mind (Garfield, 1994; Nuland, 1994; Shilts, 1987)
men who have sex with men (MSM), people living with HIV (PLWH), and those affected by their predicament developed holistic approaches to caring for those living with HIV and dying with AIDS
Death was an inescapable reality for PLWH, their communities, and the National Health Service (NHS)
Summary
From the start of the HIV epidemic in the United Kingdom in the early 1980s, a strong association between infection and death was established in the public mind (Garfield, 1994; Nuland, 1994; Shilts, 1987). One of the most striking features of the HIV epidemic from the beginning was that it tended to affect young, sexually active, previously healthy men who have sex with men (MSM), as HIV was mainly transmitted via anal intercourse in the United Kingdom. The impact of those early deaths on people living with HIV (PLWH), or at risk of HIV, and on their voluntary and professional carers, was cumulate and powerful, and contributed to shaping the responses to the epidemic. In the United States, the famous “Denver Principles,” drafted in 1983 by the People With AIDS Self-Empowerment Movement’s advisory committee, identified the right of PLWH to be “active and equal
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