Experiences of families with children with cystic fibrosis in the far north of Brazil

Cystic fibrosis is a rare, chronic, progressive and disabling disease, imparting hardship not only to the patients but their families as well. Family resilience within the context of cystic fibrosis is evidenced as an intrinsic and interrelated process, requiring a sensitive and broader look at the object of study. This study examined how families are restructured around the challenges presented by cystic fibrosis. A descriptive qualitative approach guided by the methodological theoretical framework of Symbolic Interactionism and Narrative Research was used. The analysis of the narratives resulted in the identification of two themes: The family and the child living with a new routine and Resilience in the trajectory of families. It concluded that the crises and difficulties caused by cystic fibrosis promoted the development of skills that favored family resilience.