IDEAS home Printed from https://ideas.repec.org/a/eee/cysrev/v45y2014icp28-37.html
   My bibliography  Save this article

“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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0190740914001418
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.childyouth.2014.03.035?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. 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.
    2. 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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Barbot, Janine, 2006. "How to build an "active" patient? The work of AIDS associations in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 538-551, February.
    2. Deblonde, Jessika & Meulemans, Herman & Callens, Steven & Luchters, Stanley & Temmerman, Marleen & Hamers, Françoise F., 2011. "HIV testing in Europe: Mapping policies," Health Policy, Elsevier, vol. 103(2), pages 101-110.
    3. Naydene De Lange & Claudia Mitchell, 2012. "Community Health Workers Working the Digital Archive: A Case for Looking at Participatory Archiving in Studying Stigma in the Context of HIV and AIDS," Sociological Research Online, , vol. 17(1), pages 13-28, February.
    4. World Bank, 2003. "Averting AIDS Crises in Eastern Europe and Central Asia : A Regional Support Strategy," World Bank Publications - Books, The World Bank Group, number 15114.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:cysrev:v:45:y:2014:i:c:p:28-37. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/locate/childyouth .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.