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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

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  • Mattes, Dominik

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.

Suggested Citation

  • Mattes, Dominik, 2014. "“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," Children and Youth Services Review, Elsevier, vol. 45(C), pages 28-37.
    • Handle: RePEc:eee:cysrev:v:45:y:2014:i:c:p:28-37
    DOI: 10.1016/j.childyouth.2014.03.035
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    References listed on IDEAS

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    1. Campbell, C. & Skovdal, M. & Madanhire, C. & Mugurungi, O. & Gregson, S. & Nyamukapa, C., 2011. ""We, the AIDS people...": How antiretroviral therapy enables Zimbabweans living with HIV/AIDS to cope with stigma," American Journal of Public Health, American Public Health Association, vol. 101(6), pages 1004-1010.
    2. Rosenbrock, Rolf & Dubois-Arber, Francoise & Moers, Martin & Pinell, Patrice & Schaeffer, Doris & Setbon, Michel, 2000. "The normalization of AIDS in Western European countries," Social Science & Medicine, Elsevier, vol. 50(11), pages 1607-1629, June.
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    Cited by:

    1. Ingrid Eshun-Wilson & Anke Rohwer & Lynn Hendricks & Sandy Oliver & Paul Garner, 2019. "Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model," PLOS ONE, Public Library of Science, vol. 14(1), pages 1-30, January.

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