Mapping Perceived Impact, Facilitators and Barriers of Cystic Fibrosis Management in Children and Adolescents: A Qualitative Study From the Parents' Perspective.
Sandra Gagulic, Ana Bártolo, Teresa Reis Silva and 2 others
PMID 40926640WHAT IT FOUND
Parents described cystic fibrosis care as a daily burden worsened by late diagnosis, hospital trips, shame and school pressure.
They reported child autonomy, support and normalising routines as helping daily management.
Key findings
01Parents said the pre-diagnosis period and hospital admissions caused major emotional strain and family disruption.
02Parents reported generally good adherence, but later diagnosis and hopelessness were described as barriers to airway clearance.
03All parents reported some physical activity, but school overload, schedules and weather limited it.
STILL TO COME
How it was doneWhat they foundWhat it means for PTs
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What it does not show
The study was done in one paediatric hospital in Portugal, so it may not apply to other health systems or CF populations. Only parents were interviewed; children, adolescents and health professionals were not included, so the findings are one perspective. Of 32 eligible individuals, 20 parents of 15 children were interviewed, a small purposive sample. Interview length varied from 20 to 60 minutes, which may have affected how much detail was obtained. Parents of children in acute respiratory exacerbation were excluded, and children needed FEV1 above 40 and no mechanical ventilation, so families with more severe or unstable disease may be underrepresented. The authors note possible social desirability bias, so parents may underreport difficulty or non-adherence.
The easy way to misread this
Do not read these themes as evidence that normalising routines, child autonomy or exercise support improve cystic fibrosis outcomes. The study reports parents' perceptions from a single hospital and did not measure lung function, adherence rates or treatment effects.