Marseille 2007
| Abstract #459 - Recomposition of sociality among PLWHA: Impact on medical care for seropositive patients | ||||
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Session: 6.82: Posters A (Poster) on Monday in Chaired by Authors: Presenting Author: Mr Egrot Marc - Insitut de Recherche pour le Dveloppement, France |
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| Additional Authors: Mrs Bila Blandine, Mr Traor Abdoulaye, | ||||
| Aim: The ANRS 1281 anthropological research program, Sociality networks, therapeutic quest and experience of care for PLWHA, was carried out in Burkina Faso from 2003 to 2006. The analysis especially addressed the interaction between recomposing social networks among PLWHA and therapeutic itineraries. | ||||
| Method / Issue: The results are drawn from ethnographic surveys combining direct observations, group interviews and semi-structured interviews with 53 PLWHA and 37 actors from the health-care system in the region of Ouagadougou and the province of Ganzourgou. | ||||
| Results / Comments: Learning that one is infected by the AIDS virus and then living with seropositivity from day to day are misfortunes that are all the more difficult to bear because there are so many reasons to feel grief in such a situation. Moreover, certain social conditions (poverty, destitution, precariousness, difficulty in accessing health services and treatment, etc.) makes finding out about ones seropositivity even more difficult. The collected narratives show that the period immediately following notification is particularly difficult for a great majority and attest to the very great fear that social links will deteriorate. This fear is based on a representation of AIDS that evokes an image of PLWHA in Africa who face necessary and obligatory rejection and exclusion from their social circles. For some, this fear of an social-death notification is even more intense than the suffering caused by the disease itself. However, even if discriminatory social practices persist; and even if PLWHA, particularly women and even more so for widows, are still subjected to significant prejudice (refused levirate, abandonment, plundering of property, etc.), the collected observations and narratives show that, the social lives of PLWHA do not always or automatically decline in terms of deterioration or destruction of social links, but rather the contrary. Following the initial period of self-imposed isolation, it is important to examine the social lives of PLWHA in terms of recomposing social networks: pre-existing social links deteriorate or break, but, on the contrary, they sometimes strengthen after sharing information about the seropositivity. New social links are also created around common serological status, in other words, between PLWHA. The results show that PLWHA set up new forms of sociality : co-housing, shared daily chores, assistance to those who are bedridden or hospitalized, positive discrimination at work, friendships, marital unions or even plans to have children. | ||||
| Discussion: Nevertheless, for many, the narratives attest to a veritable social renaissance. It must be highlighted that the initial period after notification is characterized by great solitude where the fear of being seen and judged by othersthe fear of social-death notificationcauses self-imposed isolation for many, sometimes combined with a feeling of defilement, shame or guilt. Obviously, experiencing notification and seropositivity this way does not promote quick access to quality therapeutic treatment. This death resulting from an social-death notification also seems to place significant restraints on voluntary testing among people who do not know their serological status yet. | ||||
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