Rev. Soc. Bras. Enferm. Ped.2012;12(2):113-21.

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Family history of the patient with cystic fibrosis until his death

DOI: 10.31508/1676-3793201200010

Abstract

Cystic Fibrosis (CF) is a chronic disease with rigorous treatment and limited survival. Purpose of the study is to know the history of the family of the patient with CF who died. It is descriptive exploratory qualitative research. We interviewed four families. Analysis was by transcription and organization of reports; readings of the interviews, signaling the central ideas and identification of categories; and interpretation of information and cross between these and literature. Project was approved by the Ethics Committee and Research of the institution responsible. Categories were identified: family’s perception of treatment and complications of the disease; family’s perception of the child’s behavior in the terminal period. It is concluded that therapy requires many adjustments in everyday family. The mother is the primary caregiver of that child, especially in the hospital. The patient recognizes his terminal, but do not verbalize clearly to parents.