Disclosure in Cystic Fibrosis: A Qualitative Study

Shirli Werner*, Ayana Halpern, Shifra Kurz, Hadas Rosenne

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

This study examined disclosure strategies in cystic fibrosis (CF) and their psychosocial implications for adults. Disclosure styles were examined based on Corrigan and Lundin's (2001) model. In-depth qualitative interviews were conducted with 42 individuals diagnosed with CF from two CF clinics in Israel. Disclosure of CF is complex and involves multiple strategies. Two main themes regarding disclosure presented here are: (a) disclosure styles and their psychosocial implications, and (b) perceptions of the differences between previous and current disclosure styles. Of disclosure styles suggested by Corrigan and Lundin (2001), most participants were found to resort to secrecy, selective disclosure, and indiscriminate disclosure and very few resorted to avoidance or broadcasting. Disclosure was also dynamic, and individuals changed their disclosure styles during various stages of life and situations, in consideration of its benefits and costs. Decisions regarding whether and to what extent to disclose the illness were based on two processes: weighing the benefits and costs of disclosure and owning the decision to disclose. Professionals should partner with the patients to understand patients’ disclosure decisions and support them. Formal and informal support may assist individuals in making these decisions, helping them become aware of benefits and costs.

Original languageAmerican English
Pages (from-to)881-903
Number of pages23
JournalJournal of Social Issues
Volume75
Issue number3
DOIs
StatePublished - 1 Sep 2019

Bibliographical note

Publisher Copyright:
© 2019 The Society for the Psychological Study of Social Issues

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