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Open Access Research article

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

Martin Mbonye1*, Sarah Nakamanya1, Josephine Birungi2, Rachel King13, Janet Seeley145 and Shabbar Jaffar5

Author Affiliations

1 MRC/UVRI Uganda Research Unit on AIDS, P.O. Box 49, Entebbe, Uganda

2 The AIDS Support Organisation, Kampala, Uganda

3 University of California, San Francisco, CA, USA

4 School of International Development, University of East Anglia, Norwich, NR4 7JT, UK

5 London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK

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BMC Public Health 2013, 13:804  doi:10.1186/1471-2458-13-804

Published: 5 September 2013

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.

Keywords:
Stigma; Antiretroviral therapy; Disclosure; Uganda; Side effects; Sero-sorting