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"All at sea": the experience of living with cystic fibrosis

Jessup, M., Parkinson, C.,

Academic Literature


This article seeks to explore the lived experiences of people with cystic fibrosis (CF) - a chronic, life-threatening, life-limiting disease that demands a relentless regime of daily treatment. The unique challenges and issue for care that CF presents were considered. Utilising a subjective perspective, data drawn from unstructured interviews included narratives and drawings contributed by children, adolescents, young adults, and parents—eight families representing nine young people with CF. Data indicated that people with CF pursue a future that is threatened and continually redefined. As a result of enhanced understanding, care can be delivered from an empathetic bearing toward those for whom it is not so much a bothersome routine, but a life-and-death imperative.

Publication information

Journal/Publication : Qualitative Health Research

Location : Australasia

Domain/s: Health and wellbeing

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