Mbonye Martin, Nakamanya Sarah, Birungi Josephine, King Rachel, Seeley Janet, Jaffar Shabbar
MRC/UVRI Uganda Research Unit on AIDS, P,O, Box 49, Entebbe, Uganda.
BMC Public Health. 2013 Sep 5;13:804. doi: 10.1186/1471-2458-13-804.
Stigma is a barrier to HIV prevention and treatment. There is a limited understanding of the types of stigma facing people living with HIV (PLHIV) on antiretroviral therapy (ART). We describe the stigma trajectories of PLHIV over a 5-year period from the time they started ART.
Longitudinal qualitative in-depth interviews were conducted with 41 members of The AIDS Support Organisation (TASO) from 2005 to 2008 in Jinja, Uganda, who were part of a pragmatic cluster-randomised trial comparing two different modes of ART delivery (facility and home). Participants were stratified by gender, ART delivery arm and HIV stage (early or advanced) and interviewed at enrolment on to ART and then after 3, 6, 18 and 30 months. Interviews focused on stigma and ART experiences. In 2011, follow-up interviews were conducted with 24 of the participants who could be traced. Transcribed texts were translated, coded and analyzed thematically.
Stigma was reported to be very high prior to starting ART, explained by visible signs of long-term illnesses and experiences of discrimination and abuse. Early coping strategies included: withdrawal from public life, leaving work due to ill health and moving in with relatives. Starting ART led to a steady decline in stigma and allowed the participants to take control of their illness and manage their social lives. Better health led to resumption of work and having sex but led to reduced disclosure to employers, colleagues and new sexual partners. Some participants mentioned sero-sorting in order to avoid questions around HIV sero-status. A rise in stigma levels during the 18 and 30 month interviews may be correlated with decreased disclosure. By 2011, ART-related stigma was even more pronounced particularly among those who had started new sexual relationships, gained employment and those who had bodily signs from ART side-effects.
This study has shown that while ART comes with health benefits which help individuals to get rid of previously stigmatising visible signs, an increase in stigma may be noticed after about five years on ART, leading to reduced disclosure. ART adherence counselling should reflect changing causes and manifestations of stigma over time.
耻辱感是艾滋病毒预防和治疗的障碍。对于接受抗逆转录病毒疗法（ART）的艾滋病毒感染者（PLHIV）所面临的耻辱感类型，人们的了解有限。我们描述了PLHIV从开始接受ART起5年期间的耻辱感轨迹。
2005年至2008年，在乌干达金贾对41名艾滋病支持组织（TASO）成员进行了纵向定性深入访谈，他们是一项比较两种不同ART给药方式（医疗机构和家庭）的实用整群随机试验的一部分。参与者按性别、ART给药组和艾滋病毒阶段（早期或晚期）分层，在开始接受ART时进行访谈，然后在3个月、6个月、18个月和30个月后进行访谈。访谈重点是耻辱感和ART经历。2011年，对24名能够追踪到的参与者进行了随访访谈。对转录文本进行翻译、编码并进行主题分析。
据报告，在开始接受ART之前，耻辱感非常高，原因是长期疾病的明显迹象以及歧视和虐待经历。早期应对策略包括：退出公共生活、因健康不佳而离职以及搬去与亲戚同住。开始接受ART导致耻辱感稳步下降，并使参与者能够控制自己的疾病并管理自己的社交生活。健康状况改善导致恢复工作和发生性行为，但向雇主、同事和新性伴侣透露病情的情况减少。一些参与者提到进行血清分型以避免围绕艾滋病毒血清状态的问题。在18个月和30个月访谈期间耻辱感水平上升可能与透露病情减少有关。到2011年，与ART相关的耻辱感更加明显，特别是在那些开始新的性关系、获得就业以及有ART副作用身体迹象的人当中。
这项研究表明，虽然ART带来了健康益处，有助于个人摆脱以前有耻辱感的明显迹象，但在接受ART约五年后可能会注意到耻辱感增加，导致透露病情减少。ART依从性咨询应反映随着时间推移耻辱感不断变化的原因和表现形式。
