O adoecimento cronico infantil : processo e narrativa - contribuição para o estudo de pacientes com fibrose cistica e asma / Chronic infant illness : process and narrative - contribution to the study of patients with cystic fibrosis and asthma

AUTOR(ES)
DATA DE PUBLICAÇÃO

2007

RESUMO

Chronic diseases have brought the attention of professionals, managers and researchers in health sciences, since these are responsible for a great burden in the morbimortality profile of contemporaneous societies, challenging the health assistance system and production of scientific knowledge. This research evaluated the chronic infant illness process in the family daily living activities and in the social networks of children with asthma and cystic fibrosis, at the Ambulatório de Pediatria do Hospital de Clínicas da Universidade Estadual de Campinas. Using a qualitative approach to the research question, 10 cases of each disease were selected, meeting the following criteria: diagnosis >1 year, different severity of disease, 5-12 years old, and home address <50 Km from Campinas municipality. Semi-structured interviews were conducted with all patients and mothers (in some cases also with fathers, siblings and teachers). These interviews dealt with many aspects related to the chronic infant illness process: life path, familial relationships, social network, school, path treatment, health care organization, assistance, changes and boundaries imposed by the disease. The interviews were taped and transcribed, which resulted in the empiric material of this research. This material was classified and organized from a broad group of empiric categories, then interpreted using the main analytical categories that guided the theoretical and methodological basis of the research: social representation, social network and stigma. Results and analysis were integrated, using two approaches: first, through the case studies, where the family life path and the chronic infant illness process were evaluated in relation to each of the cases individually; second, through the global analysis of the two diseases. As such, on the one hand much attention was given to the composition of an analytical text focusing on the bibliographic narratives , driven by the experience with the chronic disease, and on the other hand, the main aspects of chronic infant illness process experienced in relation to asthma and cystic fibrosis were identified, through a broader analysis. The different perspectives of analysis allowed for an understanding of: the idea of severity is built in the family dynamics and in the child social networks; the diagnosis of a severe disease brings a rupture in the family life path, from which the role of caregiver and life expectations are redefined; the chronic condition implies in the reorganization of family daily life activities; the health care assistance organization leads the negotiations in the family, in the social network and in the health institutions. To conclude, the chronic infant illness process is built from the social interactions in the health care system, in the child families and social networks, where biomedical and sociomedical aspects are structured.

ASSUNTO(S)

estigma biography sociologia medica biografia saude coletiva saude da criança sociology medical narração public health doença cronica chronic illness child health narration

ACESSO AO ARTIGO

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