Mediação de Saberes na Sobrevivência ao Câncer: a experiência do grupo de laringectomizados totais do HCI/INCA

Abstract

The present research is the result of reflections about surviving laryngeal cancer and the stigmatizing experience lived by people diagnosed with laryngeal cancer at HCI/INCA, who underwent total laryngectomy (TL) surgery and have to live with the disability caused by definitive tracheostomy. In the hospital environment at HCI/INCA, a group of "total laryngectomized patients" (GLT) was formed over the years, which develops actions of mutual support, music and choir, where knowledge and information that sustain and strengthen people amidst the challenges imposed by the illness are produced, circulated and appropriated. The research object was built from two prisms: a) the discourses, statements, classification schemes that guide and determine the medical practices in the hospital device in the context of an information regime; b) the practices and the mediations of knowledge and information that are built in the experience of diagnosis, illness, treatment, through social support networks and the collective production of meanings about the disease. This study sought to understand the mediations of knowledge and information produced by the participants of the group, at the interface with other social actors, such as health professionals in the hospital environment, considering their double condition of stigma: cancer and disability, factors that can reorient their new conditions of existence, identity, and social belonging. The classificatory schemes that guide medical practice have been central in health actions to the detriment of knowledge about cancer survivorship and the stigma experienced by patients, which are aspects historically neglected in the health debate. This analysis makes this study innovative in the field of Health and Information Science, seeking an interdisciplinary and socioanthropological approach. The research, qualitative and exploratory in nature, employed the methods of narrative interview and focus group with five "total laryngectomized patients" and semi-structured interviews with three health professionals who work with the group. A documentary research was carried out in the institutional information Informe INCA from 1983 to 2010 and 94 copies were analyzed. The analysis of the data set was performed through the hermeneutics- dialectics method, which enables the understanding and interpretation of data, considering the relational movement of reality in which the research participants are inserted. In the results of the research, the following issues stand out: a) the relations and conflicts between the subjectivity and the possibilities of subjectivation based on experience: b) the search for individual and social recognition as a way to mitigate the stigma and to have their knowledge valued in relation to other official knowledge; c) the social mediations built go beyond the institutional space and denote the concern and commitment of LTs with a broader social transformation and epistemologically more just.