The lived experience of fathers caring for their child with cystic fibrosis
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ABSTRACT JANA SHARDONOFSKY THE LIVED EXPERIENCE OF FATHERS CARING FOR THEIR CHILD WITH CYSTIC FIBROSIS DECEMBER 2018 Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. Most studies of the quality of life of caregivers of children with CF have focused on the mental health of mothers, reflecting a biased underlying assumption that mothers are the primary caregivers. The aim of this study was to explore the experience of fathers caring for a child with CF. Twenty fathers of children with CF were studied by use of a semistructured interview using Husserl’s descriptive phenomenology. Six themes emerged from the interviews: feeling overwhelmed, feeling isolated, experiencing altered family dynamics, actively seeking resources, experiencing financial strain, and feeling hope. Fathers of children with CF reported distressing experiences in connection with their child’s diagnosis of CF and during the course of their child’s disease, but they also a had strong feelings of hope for the future.