0335/2017 - Rupturas e continuidades biográficas nas experiências e trajetórias familiares de crianças com fibrose cística. Biographical ruptures and flows in the family experiences and trajectories of children with cystic fibrosis.
O conceito de ruptura biográfica (RB) ganhou centralidade nos estudos sociológicos sobre a experiência de adoecimento crônico, ao mostrar que tal experiência 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 semi-estruturadas 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 investigado, de forma atenta aos interesses teóricos mais amplos.
Palavras-chave:
Comportamento de Doença; Sociologia Médica; Narrativas Pessoais; Doença, genética; Criança.
Abstract:
Biographical rupture (BR) is a core concept in sociological studies on chronic illness experience. It shows how this experience can be strongly affected by ruptures in the ways of living and organizing the biographical trajectory narratives. Critical reviews have pointed out that the widespread use of this concept was not sufficiently attentive to its analytical limits, i.g., dealing with children´s experiences on genetic diseases, when biographic flows (BF) more than BR would be probably present. In this article, the concepts of BR and BF were used to analyze the relationships between the illness trajectories lived by children with cystic fibrosis (CF) and the experiences of their parentes, taking into account the narratives about their histories and family contexts, drawnsemi-structured interviews with 10 children with CF and 14 family members. The results pointed to potentialities and limits of the concepts of BR and BF for the analysis undertaken in this study. We conclude that both concepts can be applied to the analysis of family experience involving children with genetic illnesses, provided that in critical and sensitive way to subjects and contexts investigated, keeping in mind the more broader theoretical concerns.
Keywords:
Illness Behavior; Sociology, Medical; Personal Narratives; Genetic Diseases, Inborn; Child.
Biographical ruptures and flows in the family experiences and trajectories of children with cystic fibrosis.
Resumo (abstract):
Biographical rupture (BR) is a core concept in sociological studies on chronic illness experience. It shows how this experience can be strongly affected by ruptures in the ways of living and organizing the biographical trajectory narratives. Critical reviews have pointed out that the widespread use of this concept was not sufficiently attentive to its analytical limits, i.g., dealing with children´s experiences on genetic diseases, when biographic flows (BF) more than BR would be probably present. In this article, the concepts of BR and BF were used to analyze the relationships between the illness trajectories lived by children with cystic fibrosis (CF) and the experiences of their parentes, taking into account the narratives about their histories and family contexts, drawnsemi-structured interviews with 10 children with CF and 14 family members. The results pointed to potentialities and limits of the concepts of BR and BF for the analysis undertaken in this study. We conclude that both concepts can be applied to the analysis of family experience involving children with genetic illnesses, provided that in critical and sensitive way to subjects and contexts investigated, keeping in mind the more broader theoretical concerns.
Palavras-chave (keywords):
Illness Behavior; Sociology, Medical; Personal Narratives; Genetic Diseases, Inborn; Child.
Castellanos, M.E.P., Barros, NF, Coelho, SS. Rupturas e continuidades biográficas nas experiências e trajetórias familiares de crianças com fibrose cística.. Cien Saude Colet [periódico na internet] (2017/set). [Citado em 23/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/rupturas-e-continuidades-biograficas-nas-experiencias-e-trajetorias-familiares-de-criancas-com-fibrose-cistica/16387?id=16387
