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L'enfant gardien du secret. Vivre et grandir avec le sida et ses traitements à Bobo-Dioulasso (Burkina Faso)
Thèses et HDR   Open Access

L'enfant gardien du secret. Vivre et grandir avec le sida et ses traitements à Bobo-Dioulasso (Burkina Faso)

Fabienne Hejoaka
Doctoral, Université de Montpellier
16/05/2012

Résumé

Children HIV/aids chronic illness antiretroviral treatment disclosure secrecy stigmatization Enfants VIH/sida maladies chroniques médicaments annonce du diagnostic secret stigmatisation politiques internationales de l'enfance Burkina Faso
This PhD thesis provides an anthropological analysis of children's lived experience of AIDS in the historical context of Burkina Faso's national access to antiretroviral treatments in the years 2000. It is underpinned at the crossroads of political anthropology of health and anthropology of childhood, taking children as social actors whose perspectives should be taken into account. Based on a twenty-month ethnographic investigation carried out in Bobo-Dioulasso among forty-four children, their parents and caregivers, it makes an original contribution to the epistemological and methods of ethnographic investigation with children. The socio-anthropological analysis of illness and treatment experience is organized around three main themes. The first theme discusses the way in which children have been taken into account in international policies for fighting AIDS. Retracing the social and historical process by which the category of "orphans and vulnerable children" has emerged and has been institutionalized at the end of the 1990s, the analysis describes the "political treatment at the margin", which children have been the object in the responses to the epidemic. The second theme addresses HIV disclosure to children in an institutional context of "double standard" and where procedures for disclosure to children are not standardized. From ethnography of what is unspoken and what is spoken to children about the illness the analysis highlights the violence of the conditions in which they discover their illness or are brought to suspect they live with HIV. Belonging to an "AIDS generation" for which the illness carries various meanings from biological, social and moral perspectives, children keep the secret in order to avoid being stigmatized. Moreover, whereas adults are reluctant to inform children - thinking they will disclose their own or their parents' HIV status -, children proved to be the trustworthy guardians of the secret. Finally, the third theme addresses the children's lived experience of the illness, which is shaped by the uncertainty associated with death, to treatment adherence or elsewhere, to the secrecy surrounding the illness. In watermark of the children's lived experience of the disease emerges the proactive role they play in the everyday 'care work' involved in managing the disease and its treatment. Children contribute by reminding parents about treatments' schedules, they take their medications in an autonomous way, and especially they keep the secret and actively engage in hiding the disease to third parties. Indeed, whereas secrecy is hardly perceived to be in children's reality, children show themselves as guardians of the secret about their disease and that of their parents.

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