Catalan Jose, Ridge Damien, Cheshire Anna, Hedge Barbara, Rosenfeld Dana
South Kensington and Chelsea Mental Health Centre, London, United Kingdom.
University of Westminster, London, United Kingdom.
Qual Health Res. 2020 Aug;30(10):1561-1571. doi: 10.1177/1049732320922510. Epub 2020 Jun 6.
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.
从艾滋病流行开始到有效治疗方法出现之前,死亡与感染紧密相连。最初,大多是年轻的男同性恋者死于艾滋病,这对英国的应对措施产生了重大影响。与此同时,新自由主义话语逐渐形成,尤其关注公民(而非国家)应如何承担起改善健康状况的责任。随后,“成功老龄化”成为一种相关话语,进一步边缘化了关于死亡的讨论。我们的研究思考了英国历史上艾滋病流行期间围绕死亡的广泛意义,以探讨死亡叙事如何塑造当代艾滋病经历。我们招募了51名参与者,包括艾滋病患者、专业人士和活动家,进行半结构化访谈。在象征互动主义框架下进行分析,结果突出显示,艾滋病导致的死亡最初不仅被视为创伤,也具有激励作用,能激发创造力。随着有效的抗逆转录病毒药物的出现,死亡的形式发生了变化(例如,死亡知识的缺失),因此建议更好地整合姑息治疗。