Disclosing a Cystic Fibrosis Diagnosis to a Dating Partner

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT00485082
First received: June 9, 2007
Last updated: August 26, 2009
Last verified: August 2009
  Purpose

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.


Condition
Cystic Fibrosis

Study Type: Observational
Study Design: Time Perspective: Retrospective
Official Title: Disclosure of a Cystic Fibrosis Diagnosis to a Dating Partner

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Estimated Enrollment: 50
Study Start Date: June 2007
Primary Completion Date: March 2008 (Final data collection date for primary outcome measure)
Detailed Description:

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.

  Eligibility

Ages Eligible for Study:   21 Years to 35 Years
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria
  • 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.

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00485082

Locations
United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
  More Information

Publications:
ClinicalTrials.gov Identifier: NCT00485082     History of Changes
Other Study ID Numbers: 999907162, 07-HG-N162
Study First Received: June 9, 2007
Last Updated: August 26, 2009
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Cystic Fibrosis
Disclosure
Dating Partner
Phone Interview

Additional relevant MeSH terms:
Cystic Fibrosis
Fibrosis
Digestive System Diseases
Genetic Diseases, Inborn
Infant, Newborn, Diseases
Lung Diseases
Pancreatic Diseases
Pathologic Processes
Respiratory Tract Diseases

ClinicalTrials.gov processed this record on October 23, 2014