Stigma trajectories among people living with HIV (PLHIV) embarking on a life time journey with antiretroviral drugs in Jinja, Uganda

Mbonye, Martin, Nakamanya, Sarah, Birungi, Josephine, King, Rachel, Seeley, Janet and Jaffar, Shabbar (2013) Stigma trajectories among people living with HIV (PLHIV) embarking on a life time journey with antiretroviral drugs in Jinja, Uganda. BMC Public Health, 13. ISSN 1471-2458

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Abstract

Background: 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. Methods: 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. Results: 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. Conclusion: 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.

Item Type: Article
Additional Information: The authors are grateful to US Centers for Disease Control and Prevention and the UK Medical Research Council for funding the 2005–2008 research and Boehringer Ingelheim and the UK Medical research council for funding the 2011 study. They thank Brent Wolff for conceiving this study and for providing guidance throughout the study period. They thank Prof. Heiner Grosskurth for his support and encouragement throughout the study, Sarah Nakamanya, Fatuma Ssembajja and Kennedy Bwanika for data collection and to the participants for sharing their time and information so readily and being so supportive of this work.
Faculty \ School: Faculty of Social Sciences > School of International Development
Depositing User: Pure Connector
Date Deposited: 17 Dec 2013 10:08
Last Modified: 21 Apr 2020 22:24
URI: https://ueaeprints.uea.ac.uk/id/eprint/45510
DOI: 10.1186/1471-2458-13-804

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