Vivendo com Fibrose Cística: a experiência da doença no contexto familiar / Living with Cystic Fibrosis: the disease experience in the familiar context.

AUTOR(ES)
DATA DE PUBLICAÇÃO

2008

RESUMO

Cystic Fibrosis, also known as Mucoviscidosis, is a chronic disease of autosomal recessive origin and so far incurable. The present study aimed to understand the experience of Cystic Fibrosis in the familiar context of children carriers. The subjects of the study are children with Cystic Fibrosis under follow-up at a university hospital from an interior city in São Paulo state and their families. It was used the ethnographic method, the data collection was done through participant observation and open interviews, during scheduled visits at the family domicile and significant places for the family life. The results show that the disease experience, as a subjective, interpersonal and continuous process, can be approximated to the childs life history, as well as those who share the patients situations of life and care. The search for the disease meanings, social support and reduction of the stigma permeated this experience in the three temporal dimensions of the participants life. The study reveals significant dimensions of living with CF which influence the treatment adherence and the socialization processes. It was observed that the disease experience can be a relevant approach in the search for a comprehensive care.

ASSUNTO(S)

criança família enfermagem pediátrica family cystic fibrosis etnografia child pediatric nursing fibrose cística ethnography

ACESSO AO ARTIGO

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