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‘Side effects’ are ‘central effects’ that challenge retention in HIV treatment programmes in six sub-Saharan African countries: a multicountry qualitative study
  1. Jenny Renju1,2,
  2. Mosa Moshabela3,4,
  3. Estelle McLean1,2,
  4. William Ddaaki5,
  5. Morten Skovdal6,7,
  6. Fred Odongo8,
  7. Dominic Bukenya9,
  8. Joyce Wamoyi10,
  9. Oliver Bonnington1,
  10. Janet Seeley1,3,9,
  11. Basia Zaba1,
  12. Alison Wringe1
  1. 1Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, UK
  2. 2Malawi Epidemiology and Intervention Research Unit, Karonga, Malawi
  3. 3Africa Health Research Institute, KwaZulu Natal, South Africa
  4. 4University of KwaZulu Natal, KwaZulu Natal, South Africa
  5. 5Rakai Health Sciences Program, Kalisizo, Uganda
  6. 6Department of Public Health, University of Copenhagen, Copenhagen, Denmark
  7. 7Biomedical Research and Training Institute, Harare, Zimbabwe
  8. 8Kenya Medical Research Institute, Nairobi, Kenya
  9. 9Medical Research Council/Uganda Virus Research Institute Research Unit on AIDS, Entebbe, Uganda
  10. 10National Institute for Medical Research, Mwanza, Tanzania
  1. Correspondence to Jenny Renju, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK; jenny.renju{at}lshtm.ac.uk

Abstract

Objectives To explore the bodily and relational experience of taking antiretroviral therapy (ART) and the subsequent effect on retention in HIV care in six sub-Saharan African countries.

Methods In-depth interviews were conducted with 130 people living with HIV (PLHIV) who had initiated ART, 38 PLHIV who were lost to follow-up and 53 healthcare workers (HCWs) in Kenya, Uganda, Tanzania, Malawi, Zimbabwe and South Africa. PLHIV were purposely selected to include a range of HIV treatment histories. Deductive and inductive analysis was guided by aspects of practice theory; retention in HIV care following ART initiation was the practice of interest.

Results PLHIV who were engaged in HIV care took ART every day, attended clinic appointments and ate as well as possible. For PLHIV, biomedical markers acted as reassurance for their positive treatment progression. However, many described ART side effects ranging from dizziness to conditions severe enough to prevent them from leaving home or caring for themselves or others. In all settings, the primary concern of HCW was ensuring patients achieved viral suppression, with management of side effects seen as a lower priority. Where PLHIV tolerated side effects, they were deemed the lesser of two evils compared with their pre-ART illnesses. Participants who reported feeling well prior to starting ART were often less able to tolerate side effects, and in many cases these events triggered their disengagement from HIV care.

Conclusions Retention in ART care is rarely an outcome of rational decision-making, but the consequence of bodily and relational experiences. Initiatives to improve retention should consider how bodily experiences of PLHIV relate to the rest of their lives and how this can be respected and supported by service providers to subsequently improve retention in care.

  • AFRICA
  • AIDS
  • QUALITATIVE RESEARCH
  • HIV

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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