20th International AIDS Conference - Melbourne, Australia

Abstract

WEPE247 - Poster Exhibition


What am I living with? Growing up with HIV in Uganda and Zimbabwe

S. Bernays1, J. Seeley2,3, T. Rhodes1, Z. Mupambireyi4

1London School of Hygiene and Tropical Medicine, Public Health and Policy, London, United Kingdom, 2MRC UVRI Uganda, Entebbe, Uganda, 3University of East Anglia, International Development, Norwich, United Kingdom, 4University of Zimbabwe, Harare, Zimbabwe

Background: As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children''s experiences of living with HIV on treatment. We consider how the ''HIV experience'' is made in a symbiotic relationship between children, carers and healthcare workers and shaped by broader discourses.
Methods: A qualitative longitudinal sub study of a clinical trial was conducted with 104 children (aged 11-13 years) across four clinic sites in Uganda and Zimbabwe from 2011-2013. We used repeat in-depth interviews, audio diaries and focus group discussions to explore lived experiences of children growing up with HIV. We also interviewed 10 carers (related to the children) and 5 health workers in each site. Data were analyzed thematically and managed using Nvivo 8.
Results: Despite the radical development in prognosis for children, their experience of HIV is largely constructed in relation to a language of ''sickness'' through the promotion of medicalised talk and the recounting of past-illness stories. This narrow narrative framework both reflects and reproduces core dimensions of the lived experience of growing up with HIV, which emphasises an absence of resilient healthiness in the face of ongoing vulnerability and risk. Whilst the past is spoken about to reinforce disciplined adherence in order to guard against a return to critically poor health, talk about the future is studiously avoided. The silences that exist within this generation''s current narrative, limits the opportunities these children have to imagine a healthy life.
Conclusions: The challenges that children encounter in articulating alternative narratives that prioritise the relative improvements in their health, is indicative of the broader uncertainty which exists around the future for these children at this point in the epidemic.

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