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“Life is not a rehearsal, it's a performance”: An ethnographic enquiry into the subjectivities of children and adolescents living with antiretroviral treatment in northeastern Tanzania

Dominik Mattes

Children and Youth Services Review, 2014, vol. 45, issue C, 28-37

Abstract: Antiretroviral treatment (ART) enables ever more HIV-positive children in sub-Saharan Africa to grow into adulthood. While policy documents recommend that children be fully informed about their health status and actively participate in treatment related decision-making, the implementation of such recommendations is often confined by organizational shortcomings and counterproductive power dynamics within medical institutions. By briefly outlining children's enrolment in HIV treatment in a highly frequented treatment center in northeastern Tanzania, in this article I demonstrate the complexity of HIV disclosure to children and the limitations of their participation in practice. I then turn to the subjective experiences of 13 children and adolescents (9–19years) living with antiretroviral medicines. The study revealed that especially the younger among them had to maneuver a field of ‘informational inconsistency’ produced by different actors' contradicting strategies of disclosure and concealment. Furthermore, children and youths constantly had to reconcile a gap between maintaining their sense of ‘normalcy’ and contrastingly experienced debilitating drug side-effects, social discrimination, and – as far as the adolescents were concerned – uncertainties in relation to sexual relationships. Based on this ethnographic material, the article concludes with several suggestions how to improve the provision of medical services and socio-moral support for HIV-positive children and adolescents.

Keywords: HIV/AIDS; Antiretroviral treatment; Childhood; Tanzania; Sub-Saharan Africa; Subjectivity (search for similar items in EconPapers)
Date: 2014
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DOI: 10.1016/j.childyouth.2014.03.035

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