Qualitative analysis of parent experiences with achieving cystic fibrosis nutrition recommendations

Abstract Background A combined behavior–nutrition approach is recommended for children with CF with growth deficits. The present study aimed to use a qualitative approach to 1) understand families' experiences using behavior–nutrition intervention strategies and 2) identify the challenges with CF management families experienced during the developmental transition between toddlerhood and early school-age. Methods Eight families (mean age of children = 8.2 years) participated in a semistructured interview. Themes were independently identified by three coders, confirmed via consensus, and compared to a reliability coder. Results Parents discussed behavior and nutrition strategies, ongoing challenges with nutrition and behavior, new challenges, and protective factors. Challenges included transition to school, transfer of treatment responsibility, picky eating, and parental stress. Conclusions Ongoing assessment and recommendations to address parent stress and child behavior are warranted. Providing families with anticipatory guidance can better prepare families for challenging developmental transitions including starting school and the transfer of treatment responsibility.