Abel Gillian, Thompson Lee
Department of Population Health, University of Otago, Christchurch, New Zealand.
Health Soc Care Community. 2018 Jan;26(1):41-47. doi: 10.1111/hsc.12459. Epub 2017 May 29.
The development of antiretroviral (ARV) drugs to treat HIV has turned what was once a death sentence into a chronic disorder. However, a focus on absence of disease in the form of an undetectable viral load and the dismissal of the so-called "cosmetic" complications of the disease ignores perceptions of health and well-being of those living with HIV. Facial lipoatrophy is a stigmatising side effect of treatment for HIV as it betrays the presence of the virus within the body. The study took a longitudinal qualitative approach, interviewing 11 people twice over a period of 1 year on their experience of living with HIV. Two participants were given cameras and asked to take photos which represented what it was like for them to live with this condition and were interviewed four times at four monthly intervals. This paper looks at one man's struggle to conceal or veil his facial lipoatrophy. His story is presented in the form of "selfies" and extracts from in-depth interviews. It tells of an emotional (ongoing) journey of frustration, anger, excitement, depression and resignation which had a profound effect on his sense of social and psychological well-being. This suggests a more holistic approach to treating people living with HIV is needed. While an undetectable viral load is indeed vital, it should not be seen as the only essential outcome of treatment.
用于治疗艾滋病毒的抗逆转录病毒（ARV）药物的研发，已将曾经的死刑判决转变为一种慢性疾病。然而，将关注重点放在以无法检测到的病毒载量形式呈现的无疾病状态上，以及忽视该疾病所谓的“外观性”并发症，这忽视了艾滋病毒感染者对健康和幸福的认知。面部脂肪萎缩是艾滋病毒治疗中一种带来污名的副作用，因为它暴露了体内病毒的存在。该研究采用纵向定性研究方法，在1年时间里对11人进行了两次关于他们感染艾滋病毒生活经历的访谈。给两名参与者配备了相机，要求他们拍摄代表自己感染这种疾病生活状态的照片，并每隔四个月进行四次访谈。本文探讨了一名男子努力隐瞒或掩饰其面部脂肪萎缩的经历。他的故事以“自拍”和深度访谈摘录的形式呈现。它讲述了一段充满挫折、愤怒、兴奋、沮丧和顺从的情感（持续不断的）历程，这对他的社会和心理健康感产生了深远影响。这表明需要一种更全面的方法来治疗艾滋病毒感染者。虽然无法检测到病毒载量确实至关重要，但它不应被视为治疗的唯一重要结果。
