Thompson Lee, Abel Gillian
a Department of Population Health , University of Otago , Christchurch , New Zealand.
AIDS Care. 2016 Dec;28(12):1571-1576. doi: 10.1080/09540121.2016.1191615. Epub 2016 May 30.
Living with human immunodeficiency virus (HIV) in the industrialised world has for over a decade been conceptualised as living with a chronic illness. People living with HIV now are amongst the first to live and age with the virus. Drawing on a qualitative longitudinal study in a low-incidence area in a low-incidence country, this paper investigates the nuanced ways that people negotiate this condition. While it has been argued that HIV is a condition like any other chronic disease, our thematic analysis reveals some similarities and particularities around living with the condition. In comparing themselves to others with the condition, high levels of diversity of experience were identified that extended well beyond length of time from diagnosis. In comparing their illness with other illnesses, the location, for example, of their specialist service within a clinic for those with acute sexually transmitted diseases was identified as problematic. The work involved in maintaining a coherent sense of self in the face of existing and shifting challenges as a result of their infection was a second strong theme. The final theme involved flux and flex work in the ways people sought to gain and maintain control over various aspects of their lives. All of these experiences are mediated by place; that is the experience is not the same as that of those who live where there is a much higher incidence of infection. The work involved in negotiating this condition in low-incidence environments deserves more attention, but aspects of these findings are significant in higher incidence contexts as well; in particular, passivity in face of infection as one ages and the potential for medication refusal as a means of maintaining control over life and death.
在工业化世界，感染人类免疫缺陷病毒（HIV）十多年来一直被视为患有慢性疾病。如今，感染HIV的人是最早与这种病毒共存并步入老年的群体之一。本文基于对一个低发病率国家低发病率地区的定性纵向研究，探讨了人们应对这种状况的微妙方式。尽管有人认为HIV与其他任何慢性疾病无异，但我们的主题分析揭示了与这种疾病共存的一些异同点。在将自己与其他感染者比较时，发现经历的多样性程度很高，远远超出了从确诊起的时间长度。在将自己的疾病与其他疾病比较时，例如，他们的专科服务在急性性传播疾病诊所中的位置被认为存在问题。面对因感染而出现的现有和不断变化的挑战，保持连贯的自我意识所涉及的努力是第二个突出主题。最后一个主题涉及人们为在生活的各个方面获得并维持控制权而进行的灵活变通工作。所有这些经历都受到地点的影响；也就是说，这种经历与那些生活在感染率高得多地区的人的经历不同。在低发病率环境中应对这种状况所涉及的努力值得更多关注，但这些发现的某些方面在高发病率环境中也很重要；特别是，随着年龄增长面对感染时的被动态度以及作为掌控生死手段的拒绝服药可能性。
