Disclosing a Cystic Fibrosis Diagnosis to a Dating Partner
Disclosure of a Cystic Fibrosis Diagnosis to a Dating Partner
2 other identifiers
observational
50
1 country
1
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
June 5, 2007
CompletedFirst Submitted
Initial submission to the registry
June 9, 2007
CompletedFirst Posted
Study publicly available on registry
June 12, 2007
CompletedPrimary Completion
Last participant's last visit for primary outcome
March 21, 2008
CompletedJuly 2, 2017
August 25, 2009
10 months
June 9, 2007
June 30, 2017
Conditions
Keywords
Eligibility Criteria
You may qualify if:
- 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.
You may not qualify if:
- Younger than 21 years of age; Older than 35 years of age.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
Related Publications (3)
Holt R, Court P, Vedhara K, Nott KH, Holmes J, Snow MH. The role of disclosure in coping with HIV infection. AIDS Care. 1998 Feb;10(1):49-60. doi: 10.1080/09540129850124578.
PMID: 9536201BACKGROUNDKalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003 Aug;26(4):315-32. doi: 10.1023/a:1024252926930.
PMID: 12921006BACKGROUNDJoachim G, Acorn S. Life with a rare chronic disease: the scleroderma experience. J Adv Nurs. 2003 Jun;42(6):598-606. doi: 10.1046/j.1365-2648.2003.02663.x.
PMID: 12787233BACKGROUND
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Design
- Study Type
- observational
- Time Perspective
- RETROSPECTIVE
- Sponsor Type
- NIH
Study Record Dates
First Submitted
June 9, 2007
First Posted
June 12, 2007
Study Start
June 5, 2007
Primary Completion
March 21, 2008
Last Updated
July 2, 2017
Record last verified: 2009-08-25