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All at sea: The experience of living with cystic fibrosis


Jessup, M and Parkinson, CA, All at sea: The experience of living with cystic fibrosis, Qualitative Health Research, 20, (3) pp. 352-364. ISSN 1049-7323 (2010) [Refereed Article]

DOI: doi:10.1177/1049732309354277


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 Manens 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.

Item Details

Item Type:Refereed Article
Research Division:Health Sciences
Research Group:Nursing
Research Field:Nursing not elsewhere classified
Objective Division:Health
Objective Group:Provision of health and support services
Objective Field:Nursing
UTAS Author:Parkinson, CA (Dr Camillus Parkinson)
ID Code:67156
Year Published:2010
Web of Science® Times Cited:27
Deposited By:Health Sciences B
Deposited On:2011-02-26
Last Modified:2011-05-04

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