This study from HIP Investigator Dr. Rachel Grob was designed to increase our understanding of parents’ experiences managing the needs of their children with cystic fibrosis (CF) and to identify potential gaps in services. They used grounded dimensional analysis of anonymous survey data obtained from a quality improvement initiative conducted by the Cystic Fibrosis Foundation (CFF).
Two major themes emerged from parents’ survey responses: (1) parents’ expertise expands continually as they learn and adapt to changes in their children’s maturity or health and (2) parental expertise is sometimes visible or invisible to clinicians.The findings expand our understanding of lived parental experiences of CF across childhood and offer direction for future quality improvement and research.
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