Narratives of the parents’ experience of children with cystic fibrosis

Abstract

This study analyses the parents’ experience of children with cystic fibrosis. From the perspective of social anthropology, the experience of disease changes the perception of the world. Ten narratives were analyzed over a two-month period in 2010, at a public hospital in Rio de Janeiro, Brazil. The results, considering scenarios, characters and plots, highlighted: difficulties in obtaining diagnoses and understanding of the disease; exchange of information with other families; absence of paternal affection; maternal emotional overload and the role of ‘health technician’; distress among siblings; school as a place of life; constant presence of death; and difficulties with healthcare professionals. Important issues surrounding family members may be poorly known by the professionals but need to be taken into account in decision-making and in drawing up therapeutic plans.