This article examines HIV-positive patients’ experiences of treatments within a context characterized by the multiplicity of opinions expressed both by specialists and the public domain (media in particular). It is based upon a survey of 63 patients encountered in a Paris hospital. The authors demonstrate the contrasts between these patients in terms of two main dimensions: the degree of the patients’ proximity to specialist knowledge, and the level of homogeneousness that the patients attribute to medical know-how. At the point where these two dimensions meet, the article distinguishes between three forms of patient attitude towards treatment; in other words, three ways of simultaneously positioning oneself with regard to the media, associations, doctors and family circles/entourage: resorting to exteriority; self-integration into biomedical institutions; arranging heterogeneous actors. It analyses the transformations relating to the main experience profiles highlighted by sociological studies of other pathologies.
Get full access to this article
View all access options for this article.
References
1.
Barbot, J. 1998a. Agir sur les essais thérapeutiques. L’expérience des associations de lutte contre le sida en France. Revue d’Epidémiologie et de Santé Publique 46:305-15.
2.
Barbot, J. 1998b. Science, marché et compassion: l’intervention des associations dans la mise à disposition des nouvelles molécules. Sciences Sociales et Santé 16 (3): 67-96.
3.
Barbot, J. 2002. Les malades en mouvements. La médecine et la science à l’épreuve du sida. Paris: Editions Balland.
4.
Baszanger, I. 1986. Les maladies chroniques et leur ordre négocié. Revue Française de Sociologie 27 (1): 3-27.
5.
Baszanger, I.1998. Inventing pain medicine: From the laboratory to the clinic. New Brunswick, NJ: Rutgers University Press.
6.
Boltanski, L.1971. Les usages sociaux du corps. Annales, Economies, Sociétés, Civilisations (1): 205-231.
7.
Carricaburu, D., and J. Pierret. 1995. From biographical disruption to biographical reinforcement: The case of HIV-positive men. Sociology of Health and Illness17 (1): 65-88.
8.
Charmaz, K.1999. Experiencing chronic illness. In Handbook of social studies in health and medicine, edited by G. Albrecht, R. Fitzpatrick, and S. Scrinshaw. London: Sage.
9.
Chateauraynaud, F., and D. Torny. 1999. Les sombres précurseurs. Une sociologie pragmatique de l’alerte et du risque. Paris: Editions de l’Ecole des Hautes Etudes en Sciences Sociales.
10.
Conrad, P.1987. The experience of Illness: Recent and new directions. In The experience and management of chronic illness, Research in the Sociology of Health Care, Vol. 6, edited by J. Roth and P. Conrad, 1-32. London: Jay.
11.
Coser, R.-L.1962. Life in the ward. East Lansing: Michigan State University Press.
12.
Crossley, M.1998. Sick role or the empowerment. The ambiguities of life with an HIV positive diagnosis. Sociology of Health and Illness20 (4): 507-531.
13.
Dalgalarrondo, S., and P. Urfalino. 2000. Choix tragique, controverse et décision publique. Le cas du tirage au sort des malades du sida. Revue Française de Sociologie 41 (1): 119-57.
14.
Dodier, N.1995. The conventional foundations of action. Elements of sociological pragmatics. Réseaux3 (2): 147-166.
15.
Dodier, N. 1998. Sociological discourse and therapeutic research in the framework of the HIV epidemic. Paper presented at the international meeting, Aids in Europe. New Challenges for Social and Behavorial Sciences, 12-15 January, Paris.
16.
Dodier, N. 1999. L’espace public de la recherche médicale. Autour de l’affaire de la ciclosporine. Réseaux 17 (95): 107-54.
17.
Dodier, N., and J. Barbot. 2000. Le temps des tensions épistémiques. Le développement des essais thérapeutiques dans le cadre du sida. Revue Française de Sociologie 41 (1): 79-118.
18.
Epstein, S.1995. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values20 (4): 408-437.
19.
Epstein, S.1996. Impure science: Aids, activism and the politics of knowledge. Los Angeles: California University Press.
20.
Fox, R.1959. Experiment perilous: Physicians and patients facing the unknown. Glencoe, IL: Free Press.
21.
Goffman, E.1961. Asylums: Essay on the social situations of mental patients and other inmates. New-York: Doubleday.
22.
Goffman, E.1963. Stigma: Notes of the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
23.
Herzlich, C., and J. Pierret. 1987. Illness and self in society. Baltimore, MD: Johns Hopkins University Press.
24.
Laurindo da Silva, L. 1999. Vivre avec le sida en phase avancée. Une étude de sociologie de la maladie. Paris: L’Harmattan.
25.
Lemieux, C. 2000. Mauvaise presse. Une sociologie compréhensive du travail journalistique et de ses critiques. Paris: Métailié.
26.
Llewellyn-Thomas, H. A., M. J. McGreal, E. C. Thiel, S. Fine, and C. Erlichman. 1991. Patient’s willingness to enter clinical trials: Measuring the association with perceived benefit and preference for decision participation. Social Science and Medicine32 (1): 35-42.
27.
Marks, H.1997. The progress of experiment: Science and therapeutic reform in the United-States, 1900-1990. Cambridge, UK: Cambridge University Press.
28.
Mol, A.-M., and M. Berg. 1998. Introduction. In Differences in medicine: Unraveling practices, technics and bodies, 1-12. Durham, NC, and London: Duke University Press.
29.
Morin, M., and J.-P. Moatti. 1996. Observance et essais thérapeutiques: obstacles psychosociaux dans la recherche sur le traitement de l’infection par le VIH. Natures-Sciences-Sociétés 4 (3): 2-15.
30.
Pollak, M. 1988. Les homosexuels et le sida. Sociologie d’une épidémie. Paris: Métailié.
31.
Ross, M., K. Jeffords, and J. Gold. 1993. Reasons for entry into and understanding of HIV/AIDS trials. Aids Care6 (1): 77-83.
32.
Roth, J.1963. Timetables: Structuring passage of time in hospital treatment and other careers. Indianapolis, IN: Bobbs-Merrill.
33.
Strauss, A., J. Corbin, S. Fagerhaugh, B. Glaser, D. Maines, B. Suczek, and C. Wiener. 1984. Chronic illness and the quality of life. St. Louis, MO: C. V. Mosby.
34.
Strauss, A., S. Fagerhaugh, B. Suczeck, and C. Wiener. 1985. The social organization of medical work. Chicago: University of Chicago Press.
35.
Zola, I.1966. Culture and symptoms: An analysis of patients’ presenting complaints. American Sociological Review31:615-630.
