Abstract
BackgroundStigma 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.MethodsLongitudinal 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.ResultsStigma 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.ConclusionThis 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.
Highlights
Stigma is a barrier to HIV prevention and treatment
In this paper we report on the stigma experiences of a sample of adults attending The AIDS Support Organisation (TASO) Jinja branch clinic after confirmation of HIV infection through to starting and staying on antiretroviral therapy (ART) for a period of about three years (2005–2008)
Is a vignette that looks at the stigma experience of one participant: Stigma trajectory of a female participant FFL3 was a Muslim woman of 30 years who had four children by the time of the enrolment interview
Summary
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). Goffman (1963) defined stigma as “an attribute that is deeply discrediting,” and that reduces the bearer “from a whole and usual person to a tainted, discounted one”. It refers to “bodily signs designed to being infected with HIV is still feared and morally judged, pointing to the persistence of stigma [9,10]. A South African study on stigma experiences of people on ART, concluded that the body of a person living with HIV is a highly stigmatized one and this places a heavy burden on PLHIV [14]. Withdrawing from social activities as a strategy against felt and enacted stigma has already been documented in a Ugandan population [17,18,19]
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