title: Social experience among vulnerable populations: conflicts and negotiations between chronic patients and their doctors seen as a challenge to medical practice.
abstract: This article attempts to explore the impact of a chronic illness, end-stage renal disease, on the management of every day life between the actors involved: lay people, the affected children and their families and the medical personnel. The focus is on the nature and the process of interaction between these parties which are confronted from the onset of the illness with fundamental uncertainty concerning length of survival and the reliability of sophisticated technology such as dialysis techniques and transplantation. Within the framework of the organization of this serious illness, such interaction is concretized in the form of certain tasks to be accomplished. These constitute medical work which combines to shape the social relationships between lay people and professionals into confrontation. First, information was gathered from direct observation and fieldwork in two Units of Pediatric Nephrology located in two different hospitals in Paris. Fieldwork was followed by surveys using semi-structured interviews carried out among patients in a private clinic and the unit's personnel, medical and non medical, the families in their homes, and some adolescents in the units. Then questions were raised about strategies and negotiations, in order to reach an agreement as to when a conflict arises. The medical work is carried out in a context of changing situations, constantly called into question by the illness, and thus discovering a social order in which lay people become actors in these new situations.
authors.affiliation: Centre National de la Recherche Scientifique (CNRS) Paris, France. renee-noemie@noos.fr
authors.forename: R
authors.initials: R
authors.lastname: Waissman
mesh_terms: D000293:Adolescent; D002648:Child; D003220:Conflict, Psychological; D003625:Data Collection; D005190:Family; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy; D010817:Physician-Patient Relations