Disclosing a Cystic Fibrosis Diagnosis to a Dating Partner
Condition: Cystic Fibrosis
MeSH terms: Cystic Fibrosis; Fibrosis
Study type: Observational

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.
    

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.
    

Time perspective: Retrospective
Keywords: Cystic Fibrosis; Disclosure; Dating Partner; Phone Interview