Conducted jointly by UM1 and IRD, this research sheds light on the experience of children living with AIDS in Bobo-Dioulasso.
The Essentials: Conducted jointly by UM1 and IRD, this research sheds light on the experience of children living with AIDS in Bobo-Dioulasso.
Fabienne Hejoaka, researcher at TransVIHMI; CEAf (Université Montpellier 1).
Thesis defended in 2012.
This research is the product of an international joint supervision (cotutelle) between several partner institutions.
Context and Research Question
The experience of children living with HIV/AIDS in Burkina Faso is often marginalized in public health discussions. This thesis by Fabienne Hejoaka proposes a socio-anthropological analysis of this experience, shedding light on the dynamics lived by these children within the framework of access to antiretroviral treatment established in the mid-2000s. The study sits at the intersection of the political anthropology of health and the anthropology of childhood, treating children not as mere victims but as social actors who play an active role in managing their own illness.
The stigmatization process these children face is exacerbated by health policies that do not always take their voices into account. The category of "orphans and vulnerable children" became institutionalized from the late 1990s onward, yet HIV/AIDS strategies often overlook the specific needs of this population. The absence of a standardized approach to disclosing the illness, and the secrecy surrounding children's serological status, pose considerable challenges to their psychological and social well-being.
Methodology
The study is based on an ethnographic survey conducted over twenty months in Bobo-Dioulasso, involving a sample of thirty-seven children as well as their parents and caregivers. This methodology makes it possible to explore in depth the experiences and perceptions of children facing their illness. Interviews and field observations were used to gather data on children's daily experiences, family dynamics, and interactions with the health care system.
This ethnographic approach captures the subtleties of children's experiences, revealing how they navigate an environment often marked by silence and stigma. The study emphasizes the need to treat children as active participants in research, thereby enriching knowledge of their lived experience and its implications for public health policy.
Key Findings
The Politics of the Fight Against HIV/AIDS
The analysis shows that children have been insufficiently accounted for in international HIV/AIDS policies. This "marginal political treatment" has profound consequences for their status and their perception of the illness. Children are often placed into administrative categories without their voices being heard, which limits their capacity to influence decisions that concern them.
Disclosing the Illness
Disclosure of serological status to children frequently occurs under precarious conditions. Standardized procedures are lacking, leading to situations where children discover their illness amid silence and things left unsaid. This absence of open communication can cause significant psychological harm, compounded by the stigma associated with the disease.
Children, as "keepers of the secret," live under considerable pressure to hide their status. This phenomenon underscores their active role in managing their illness, as they take precautions to avoid any stigmatization from those around them.
Managing the Illness and Its Treatments
The findings also reveal that children play a proactive role in managing their treatments. They remind adults of medication schedules and often take their medication independently. This autonomy reflects a maturity and sense of responsibility that deserve recognition. However, this management is also marked by uncertainty about death and treatment continuity, forcing children to navigate a space of tension between hope and fear.
Discussion and Outlook
The findings of this thesis highlight the urgent need to include children's voices in public health policy. Ignoring their perspective risks perpetuating cycles of stigma and suffering. Children living with HIV/AIDS must be considered full-fledged actors in the fight against this disease, not merely passive recipients of care.
Integrating their experience into HIV strategies could contribute to interventions that are better adapted to and more respectful of their needs. Policymakers should consider approaches that foster open communication about the illness and allow children to express themselves without fear of stigmatization.
Fabienne Hejoaka's analysis opens the way to further research on the role of children in managing their own health, as well as reflection on intervention methods that could better respond to their realities. By recognizing and valuing their role, it becomes possible to build a more inclusive and supportive framework for children living with HIV/AIDS in Burkina Faso and beyond.
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Sources and Access
Fabienne Hejoaka. L'enfant gardien du secret. Vivre et grandir avec le sida et ses traitements à Bobo-Dioulasso (Burkina Faso). Anthropologie sociale et ethnologie. Ecole des Hautes Etudes en Sciences Sociales (EHESS), 2012. Français. ⟨NNT : ⟩. ⟨tel-00761339⟩