“All at Sea”: The Experience of Living With Cystic Fibrosis

Abstract

In this qualitative study the researchers explored living 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. Utilizing a phenomenological 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. In line with van Manen’s approach, four existentials were used to consider a lifeworld in which notions of time, body, space, and relationship are indelibly altered. From original fright, through ongoing dynamics of fear, fight, flight, form, familiarity, and philosophy, 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.