Living with HIV/AIDS and/or Hepatitis C in Argentina: a comparative study on patients social autonomy

MARIO PECHENY; HERNÁN MANZELLI; JUAN PEDRO ALONSO

Toronto

Conferencia; XVI International AIDS Conference; 2006

International AIDS Society

Background: In sexual-reproductive health, chronic illnesses and palliative care, issues related to autonomy (information, consent, confidentiality, competence, decision-making) are crucial, personal and often problematic. We examine different conceptions of “being a patient”, in order to analyze questions beyond health-illness: the social construction of the body, the process of individuation and citizenship.  We discuss the relationships between health and human rights through the concept of “autonomy”. We explore both empirically and conceptually three ideal-types of patient in relation to her/his autonomy as an individual capable of judgment and action, and subject of rights and responsibilities. This allows us to redefine critically what we understand by “autonomous subject” in the field of health and illness.Objective: to analyze patients’ and health professionals’ opinions and practices regarding to patients’ autonomy. We aim to build a typology based on patients’ autonomy.Our empirical study deals with: 1) chronic illnesses (HIV/AIDS; hepatitis C); 2) sexual-reproductive health (women attending gynecological consultations); and 3)palliative care.Methods: The corpus is composed by in-depth interviews with 60 patients, contacted through snowball. Interviews were recorded, transcribed, manually coded and analyzed using software for qualitative data, following an inductive orientation -closed to a “grounded-theory” approach. Results: a) the analysis of the process of citizenship allows a reexamination of the interactions in the health domain, b) while the empirical analysis about health issues allows reconsideration of the very idea of autonomy, in particular related to the body.Based on the experience of HIV/AIDS and/or HCV, reproductive health and palliative care patients, we constructed a typology of patients: as passive subjects, as users of health services, and as citizens-interlocutors. Comparatively, HIV/AIDS patients resulted the most autonomous among these cases (the "citizen-type" of patient). Conclusions: Social and political patients networks are crucial to determine individual patients´ autonomy, both in and outside the health services.