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Difficulties experienced by the mothers of people with cystic fibrosis1 1 Extract from the dissertation - Cystic fibrosis: multiple perspectives on the being with cystic fibrosis", presented to the Postgraduate Program in Health Sciences, State University of Maringá, in 2009

Dificultades vivenciadas por la madre de personas con fibrosis quística

This study aimed to understand difficulties experienced by mothers in life with, and caring for, their children with cystic fibrosis. A descriptive-exploratory study with a qualitative character, its population consisted of 14 women. Data collection involved a semi-structured interview. The statements' analysis allowed the identification of two units of meaning: 'The treatment of cystic fibrosis: facing difficulties'; and 'The child's future: the difficult coexistence with the hope for a cure and a normal development'. Difficulties experienced by the mothers relate to disbelief regarding the diagnosis, the mourning for the loss of the dreamt-of child, acceptance of the inevitable and the struggle for the child's life and comfort. It is important for the health team to present another perspective on the health-illness process regarding chronic illnesses in order to support individuals affected and their families in the most efficacious and complete way.

Cystic fibrosis; Mother-child relations; Family; Nursing


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