Navigating School While Living With Cystic Fibrosis: Barriers and Support Strategies From the Patient and Family Perspective.

Authors

Katelyn Heimbruch, Sarah Strong, Matt Wackler, Marissa Taylor, Qing Duan, Stephanie S Filigno, Michelle Hjelm

Published in

Pediatric pulmonology. Volume 61. Issue 10. Pages e71870.

Abstract

Managing cystic fibrosis (CF) requires balancing medical treatments with age-appropriate activities and responsibilities. Educational success and attainment are predictors of future health and functional outcomes later in life. To optimize educational functioning and provide tailored support, it is essential to understand the unique perspectives and needs of people with CF (PwCF) and their caregivers.
A cross-sectional, survey-based study was conducted in August 2024. The Cystic Fibrosis Foundation distributed the survey electronically via the Community Voice platform, and accredited CF programs distributed the survey to their local families.
Survey respondents included 146 PwCF, caregivers and caregiver-PwCF pairs, representing PwCF ages ranging from 2 to 21. Results indicated that PwCF and their caregivers value support from the CF care team to address educational challenges, including frequent absences due to medical appointments, obtaining needed accommodations (i.e., medications and bathroom passes), managing infection control, and the impact of CF-related health issues on academic performance.
This study identifies common school-related issues faced by PwCF and caregivers that warrant targeted and proactive attention to support academic achievement and wellbeing. Caregivers and PwCF feel comfortable addressing school-related issues with CF care teams and prefer the care team to initiate conversations about school. Study results emphasize the benefit of having a centralized and comprehensive CF-specific repository that can be easily accessed by care teams to proactively provide tailored resources and information to reduce the burden of school-related issues and consequently promote improved quality of life.

PMID:
42870664
Bibliographic data and abstract were imported from PubMed on 14 Oct 2026.

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