(339) Improving Cystic Fibrosis Education for Parents of Newly Diagnosed Newborns

Background: Since 2007, when the state of Michigan began cystic fibrosis (CF) newborn screening, the CF diagnosis typically occurs in the days or weeks following birth. Parents and caregivers are usually bombarded with education in a time when emotions and coping styles may have an impact on their ability to retain information. This project aims to re-evaluate our new patient education materials and processes. By improving education to parents of newly diagnosed infants, we aim to improve parental confidence in the care of a child with CF by end of the first year of life.

Methods: To evaluate parental confidence, satisfaction, and preferences, we surveyed the parents of patients who had been diagnosed at our center between Jan 2019 and May 2021 and were ages 6 to 36 months. We developed the survey with social work, nursing, psychology, pulmonology, and parent advisory council input. The survey was created using an institution contracted vender, Qualtricsâ. One invitation was sent to families with multiple children with CF. Responses were reviewed and a focus group arranged for more detailed feedback.

Results: Of the 14 families that were eligible, 9 (64%) completed surveys. Parents reported receiving either the right amount (67%) or too little (33%) education. Parents categorized education modalities into “highly prefer,” “useful, but not first preference,” and “do not like.” Highly preferred were verbal/interactive learning (78%) and written and printed materials (67%). Digital print materials, videos, and social media or other parents of children with CF ranked lower with more parents placing them as second or third choice. Confidence levels on a seven-point Likert scale in various CF care and knowledge areas revealed mean levels ranging from 4.22-5.89, but with large standard deviations (0.83-1.75), indicating a wide range of confidence levels, some as low as 1 out of 7.

Eight parents (89%) left contact information and were invited to a focus group in March 2022. Two parents responded and one attended along with a parent advisor from our counsel and our CF center coordinator who does not have routine clinical interactions with families. Parent input revealed that current printed materials are mostly useful, as they cover what CF is; and several new topics were identified (parental mental health resources, family/sibling coping, mentoring programs, equipment tips, preparing for school, tips for traveling, etc.) for addition to the materials given at diagnosis. While much of this information is given over the course of their care, compiling resources to one location for easy access and education up front was identified as a potential improvement. They desire printed information on caring for someone with CF for reference at home and to share with their families. Much time was spent on mental health support information and ways to support the parents in educating their own family members on this topic. Positive support was given for the idea of addressing one area of the binder at each visit in the first year of life.

Conclusions: To improve confidence and satisfaction in newborn CF education, our program aims to revise our birth to age 12 months education program. Further focus groups will be added for additional feedback. Using input from our survey and focus groups, our parent advisory council and CF care team began editing and creating materials in the first half of 2022, with the goal of implementation in late 2022 with post-surveys in 2023.

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