“ I gained a superpower… is this how normal people feel? ”: A qualitative exploration of dietary perceptions and experiences amongst adults living with Cystic Fibrosis in the modulator era
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Background
Cystic Fibrosis (CF) care has been transformed by modulator therapies, which have extended survival and reshaped daily health management. While CF-specific nutrition guidelines have shifted to focus not just on energy, but also on diet quality, we still know little about how adults living with CF perceive and experience diet in this new treatment era. To address this, the present study aims to explore in depth, the experiences and perspectives of Irish adults living with CF regarding diet and nutrition in a modulator therapy era.
Methods
Adults living with CF were recruited via Cystic Fibrosis Ireland networks and specialist clinics across Ireland. Data were generated through virtual focus groups and semi-structured interviews on Microsoft Teams. Transcripts were managed in NVivo® and examined using Braun and Clarke’s inductive thematic analysis framework.
Results
Three focus groups ( n = 9) and 20 semi-structured interviews were completed. Of the 29 participants (male: 62.1%, mean age: 35.0 ± 10.1), one participant was underweight, and 48.3% were overweight/obese. Five interconnected themes were identified: Legacy effects of CF historic diet ; Evolving relationship with food ; Weight gain and altered body image ; Reclaiming authority over the body ; Navigating dietary choices . Participants described persistent anxieties, shifting habits, and the influence of social, emotional, and practical factors on food practices. While the modulator era has led to more autonomy, adults living with CF desire more holistic nutrition guidance, and voiced novel concerns related to their self-image.
Conclusion
This study is the first in-depth exploration of Irish adults living with CF, and shows how historic diets, modulators, and daily contexts shape food experiences. Participants reported shifting relationships with food, body image, and autonomy since the introduction of modulators, underscoring the need for holistic, patient-centred nutrition care that integrates medical guidance with lived experience.
