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Disclosing a Cystic Fibrosis Diagnosis to a Dating Partner

This study has been completed.
Sponsor:
ClinicalTrials.gov Identifier:
NCT00485082
First Posted: June 12, 2007
Last Update Posted: July 2, 2017
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Information provided by:
National Institutes of Health Clinical Center (CC)
June 9, 2007
June 12, 2007
July 2, 2017
June 5, 2007
March 21, 2008   (Final data collection date for primary outcome measure)
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Complete list of historical versions of study NCT00485082 on ClinicalTrials.gov Archive Site
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Disclosing a Cystic Fibrosis Diagnosis to a Dating Partner
Disclosure of a Cystic Fibrosis Diagnosis to a Dating Partner

This study will examine the experience of disclosing a cystic fibrosis (CF) diagnosis to a dating partner. CF has implications for potential life partners (issues of fertility, decreased life span and an increasing need for medical management with age) that may make disclosure particularly sensitive. An understanding of the disclosure process may provide insight into ways health care practitioners can support their patients during this process.

People between 21 and 35 years of age with CF who have been in at least one dating relationship may be eligible for this study.

Participants are interviewed by telephone about their experiences living with cystic fibrosis and telling dating partners about their diagnosis. The interview includes questions about:

  • Past experiences disclosing their CF diagnosis to a dating partner
  • What information was disclosed versus what was not disclosed
  • Why certain information was disclosed or not disclosed
  • Positive and negative implications of the disclosure or non-disclosure

The interview lasts about 60 minutes and is tape-recorded for later review and analysis.

Cystic fibrosis (CF) is an autosomal recessive chronic medical condition. As medical treatment is improving more persons with CF are living into adulthood and are entering into serious dating relationships. A diagnosis of CF has medical implications of concern to potential life partners including infertility, decreased life span and an increasing need for medical management with age. In addition, there is a small but non negligible possibility of future children inheriting the condition. These implications may make this type of disclosure a particularly important event in one's life and may affect one's disclosure decisions. Little research has been done on the process of disclosure in this population, and research specifically on disclosure to dating partners is lacking.

This study seeks to gain insight into the experience of disclosing a CF diagnosis to a dating partner through semi-structured in-depth phone interviews with approximately 30 persons who have CF and who vary in gender, age, ethnicity, and severity of their condition. The interviews will explore general experiences of disclosure to dating partners, will focus on selective disclosure of certain information to certain recipients, and will explore the implications of the disclosure or non-disclosure experiences. The qualitative interviews will be transcribed and subjected to thematic analysis, which will identify common themes across interviews. An understanding of the disclosure process experienced by persons with cystic fibrosis may provide insight into ways health care practitioners can support their patients during this process.

Observational
Time Perspective: Retrospective
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Cystic Fibrosis
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*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Completed
50
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March 21, 2008   (Final data collection date for primary outcome measure)
  • INCLUSION CRITERIA:

Self-reported to have been diagnosed with cystic fibrosis.

Self-reported to be in or have been in at least one dating relationship

English speaking.

EXCLUSION CRITERIA:

Younger than 21 years of age; Older than 35 years of age.

Sexes Eligible for Study: All
21 Years to 35 Years   (Adult)
No
Contact information is only displayed when the study is recruiting subjects
United States
 
 
NCT00485082
999907162
07-HG-N162
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National Human Genome Research Institute (NHGRI)
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National Institutes of Health Clinical Center (CC)
August 25, 2009