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Qualitative Health Research
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Only when I Cough? Adults’ Disclosure of Cystic Fibrosis

Karen Lowton

Department of Palliative Care and Policy, Guy’s, King’s and St Thomas’ School of Medicine, King’s College London.

Cystic fibrosis has traditionally been conceptualized as a fatal childhood disease. In contrast, survival age has been increasing steadily such that adults now routinely seek to gain employment and form close relationships, situations that might require telling others about the disease. Here, the author examines three situations of disclosure based on interviews with 31 adults with the disease. First, in a low-risk situation, for example a short period of social contact, a low level of intimacy exists between the adult with cystic fibrosis and another. Here the disease may be concealed easily with little risk of discovery. Second, in a medium-risk situation, the perceived reaction of the other begins to influence the decision to disclose, as the level of intimacy becomes higher. Last, in high-risk situations, such as employment, the consequences of disclosing or concealing CF are most severe. However, a multiplicity of factors, including perceived social support and disease progression, are seen to influence adults’ decisions to disclose their disease.

Key Words: cystic fibrosis • disclosure • risk perception • risk management

Qualitative Health Research, Vol. 14, No. 2, 167-186 (2004)
DOI: 10.1177/1049732303260675


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This article has been cited by other articles:


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Qual Health ResHome page
B. Williams, J. Corlett, J. S. Dowell, J. Coyle, and S. Mukhopadhyay
"I've Never Not Had it So I Don't Really Know What it's Like Not to": Nondifference and Biographical Disruption Among Children and Young People With Cystic Fibrosis
Qual Health Res, October 1, 2009; 19(10): 1443 - 1455.
[Abstract] [PDF]


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Evid. Based Nurs.Home page
Other articles noted: 14 Nov 2003 to 30 Jan 2004
Evid. Based Nurs., April 1, 2004; 7(2): e2 - e2.
[Full Text] [PDF]