Abstract
With the advent of effective treatment against HIV, turning HIV infection a "chronic disease", HIV associations have developed apparatus to improve the "quality of life". Those apparatus are based, for instance, on leisure activities, and are considered beneficial for the health of “persons living with HIV” (PLHIV). In the meantime, HIV sociology shows us that patients are haunted by the fear of stigmatisation, which often causes difficulties in managing this « discreditable attribute » visibility (Goffman, 1963). However, the stigma management question does not appear in those associative activities. How are articulated the health logic in those apparatus and the experience of those people facing this heavy management of stigma ? What are these associative apparatus providing to PLHIV ? This thesis focuses on the experience that PLVIH have with associative apparatus conceived to improve the quality of life. To understand this experience, an ethnographic survey based on a participant observation was conducted during 9 months, inside such activities of four associations located in two departments of a French region. In addition to the collected data came twenty-two interviews with PLHIV, using or not these associative apparatus, and three interviews with founders of some of those associations in order to explore the socio-historical context of their development. As public health apparatus, the associative activities are conceived as spaces of socialisation to the role of "good chronic patient". The improvement of the quality of life then goes through the normalization of the PLHIV’s habits self-caring and prevention perspectives. Public health apparatus implemented to this end are, however, more or less instrumentalized by the actors (Lascoumes et Le Galès, 2004) regarding their own experience and dispositions. The trajectories of associations's leaders and the mode of organization of those associations, led by PLHIV (self-organized) or by medicosocial professionals (organization for others) lead them to build their own freedom margins. Facing the health logic proposed by their institutional environment,those freedom margins give specificities to the concept of « quality of life ». In any case, issues related to stigma management and the search of community links remain overshadowed by the emphasis on the quality of life. In this context, the life trajectories and the dispositions of those PLHIV (related to their employment status, health situation, health care trajectory) lead them either to avoid the associations to hide their discriminatory traits, or to use them in order to forge some community links free of any stigmatisation. However, the gaining those links can only be achieved if they agree to the norms promoted by the associations apparatus which are, ultimately, not very interested in their desires for community links.