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Ciênc. Saúde Colet. (Impr.) ; 23(2): 357-368, Fev. 2018. tab
Article in Portuguese | LILACS | ID: biblio-890519

ABSTRACT

Resumo O conceito de ruptura biográfica (RB) ganhou centralidade nos estudos sociológicos sobre a experiência de adoecimento crônico, ao mostrar que esta pode estar fortemente marcada por rupturas nas formas de viver e de organizar narrativamente a trajetória biográfica. Revisões críticas apontaram que o emprego generalizado do conceito esteve pouco atento a seus limites analíticos, por exemplo, diante de experiências relacionadas a doenças genéticas entre crianças, quando continuidades biográficas (CB) mais do que de RB estariam presentes. Neste artigo, empregou-se os conceitos de RB e de CB para analisar as relações entre as trajetórias de adoecimento de crianças com fibrose cística (FC) e as experiências de seus pais, tendo em perspectiva as narrativas sobre suas histórias e contextos familiares, depreendidas de entrevistas semiestruturadas realizadas com 10 crianças com FC e 14 familiares. Os resultados apontaram para potencialidades e limites dos conceitos de RB e CB para a análise pretendida. Conclui-se que ambos os conceitos podem ser aplicados à análise da experiência familiar com doenças genéticas infantis, desde que empregados de modo crítico e sensível aos sujeitos e contextos investigados, de forma atenta aos interesses teóricos mais amplos.


Abstract Biographical disruption (BD) became a core concept of sociological studies on the chronic illness experience by showing how this event can be strongly affected by ruptures in the ways of living and organizing the biographical trajectory through narratives. Critical reviews have pointed out that the widespread use of this concept was not sufficiently attentive to its analytical limits, e.g. addressing experiences of children with genetic diseases, when biographic flows (BF) rather than BD would be probably found. In this paper, we employed the concepts of BD and BF to analyze the relationships between the illness trajectories of children with cystic fibrosis (CF) and the experiences of their parents, taking into account the narratives about their histories and family contexts, drawn from semi-structured interviews with 10 children with CF and 14 family members. The results pointed to potentialities and limits of the concepts of BD and BF for the analysis undertaken in this study. We conclude that both concepts can be applied to the analysis of family experience involving child genetic diseases, provided that this occurs in a critical and sensitive way to subjects and contexts investigated, keeping in mind the more broader theoretical concerns.


Subject(s)
Humans , Male , Female , Child, Preschool , Child , Adolescent , Parents/psychology , Family/psychology , Cystic Fibrosis/psychology , Chronic Disease , Interviews as Topic
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