The Lived Experience of Fathers Caring For a Child with Cystic Fibrosis
Jana Shardonofsky, Sandra K. Cesario, Nina Fredland, Peggy Landrum, Peter W. Hiatt, and Felix R. Shardonofsky
Most studies on the quality of life of caregivers of children with cystic fibrosis (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 via a semi-structured interview using Husserl’s (1970) descriptive phenomenology. Fathers were enrolled from two accredited CF centers in Texas. Six themes emerged from the interviews: fathers reported 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 also reported a strong feeling of hope for the future. Practical implications for nurses include screening for anxiety and depression in fathers at the time of CF diagnosis, as well as potentially implementing a peer mentoring program for fathers.