Self-efficacy: empowering parents of children with cystic fibrosis.

BACKGROUND: Can parent engagement in the development and delivery of educational materials for cystic fibrosis (CF) promote increased self-efficacy and confidence in self-management skills? Standard therapies for a child with CF frequently involve pulmonary treatment, medications, and behavioral and nutritional interventions. Parents report that the prescribed CF care can be overwhelming. Previous research at this pediatric CF Center indicated the parental perception of the difficulty in managing CF-related nutrition therapy. Parents' nutrition knowledge was an initial target of this continuous quality improvement (CQI) project with a long-range aim of increasing children's median body mass index (BMI) percentiles for patients at this pediatric CF center. METHODS: The local CF Parent Advisory Council, CF parents and staff collaborated on this family-centered CQI project. A CF parent website with weekly email newsletters and a facebook page were developed and evolved with input from parents. Parental feedback was gathered through electronic surveys, written questionnaires, focus groups and informal interviews. A convenience sample of parents participated in pre- and post-intervention surveys to determine change in self-confidence in effectively managing their children's CF treatment regimens. Results were also compared with responses from a larger previous survey. RESULTS: Parental knowledge of nutrition facts and medical nutrition therapy for CF did not increase significantly over the course of the CQI project. Surveyed parents reported increased confidence in their self-management skills. Although mean BMI percentiles have increased at this center, they remain below the national average. CONCLUSIONS: Parent-driven educational strategies provide an opportunity to promote reliable CF-related information in parent-preferred formats that enhance self-management skills in caring for children with CF. Parental confidence to follow CF center recommendations increased between 2004 and 2011. Although many factors may impact confidence, parent satisfaction with the creation of electronic resources and engagement in the CQI process were intangible, but important outcomes.