Pilot Study of the Process of Prenatal Genetic Counseling

NCT00047905 | Completed

• 2 other identifiers: 03000903-HG-0009
• Study Type: interventional
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

This study will examine the process of prenatal genetic counseling to determine how various client and counselor factors affect the communication process in a counseling session. The specific aims of the study are to:

• Provide information on prenatal genetic counselors' interactions with clients for the basis of a future larger study of the genetic counseling process.
• Determine the average length and the range of length of prenatal genetic counselors' interactions with clients when family history information has already been provided.
• Document on videotape the communication content and interaction dynamics of prenatal genetic counselors interacting with clients in order to:
• Characterize different models of prenatal genetic counseling
• Determine the nature of discussions concerning cystic fibrosis carrier testing within the context of prenatal genetic counseling.
• Examine the impact of prenatal genetic counselors' characteristics (years of experience, training and background, age, clinical setting, anxiety) on the communication content and interaction dynamics of sessions with clients.
• Examine the impact of the presence of a spouse on the communication content and interaction dynamics of prenatal genetic counseling sessions with clients.
• Examine the impact of client verbal emotional cues on the communication content and interaction dynamics of prenatal genetic counseling sessions. Counselors will be recruited for this study from among practicing prenatal genetic counselors at regional meetings and a national meeting of the National Society of Genetic Counselors. They will perform prenatal genetic counseling sessions with actors in the roles of client and client's spouse. The sessions will be videotaped, and the counselor and actors will fill out questionnaires regarding the characteristics of the counselor and the session. Counselors may be contacted later to request permission to use segments of their videotaped sessions for creating a video teaching tool for counseling professionals that illustrates different ways to practice the genetic counseling.

Conditions

Genetic Counseling

Keywords

Qualitative; Communication Analysis; RIAS; Counseling Models; Videotaping; Prenatal Genetic Counselors; Counseling Process; Video Tape Study; Simulated Clients; Prenatal Genetic Counseling

Interventions

examine the process of prenatal genetic counseling BEHAVIORAL

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• Any master's trained genetic counselors attending the 2002 regional meetings and/or a national meeting of the National Society of Genetic Counselors who currently provide prenatal genetic counseling services as part of their professional practices will be included in the study. In addition, any prenatal genetic counselors referred by these individuals, but who did not attend these meetings, will also be eligible to participate.

You may not qualify if:

• Genetic counselors who do not practice prenatal counseling training programs will be excluded In addition, master's level students currently in genetic counseling training programs will be excluded from the study because differences in their stages of training and practice development would introduce additional variability into the data set.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI)

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Bernhardt BA, Biesecker BB, Mastromarino CL. Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment. Am J Med Genet. 2000 Sep 18;94(3):189-97. doi: 10.1002/1096-8628(20000918)94:33.0.co;2-e.

  PMID: 10995504 BACKGROUND

• Biesecker BB, Peters KF. Process studies in genetic counseling: peering into the black box. Am J Med Genet. 2001 Fall;106(3):191-8. doi: 10.1002/ajmg.10004.

  PMID: 11778979 BACKGROUND

• Bernhardt BA, Geller G, Doksum T, Larson SM, Roter D, Holtzman NA. Prenatal genetic testing: content of discussions between obstetric providers and pregnant women. Obstet Gynecol. 1998 May;91(5 Pt 1):648-55. doi: 10.1016/s0029-7844(98)00011-8.

  PMID: 9572205 BACKGROUND

Study Design

• Study Type: interventional
• Phase: not applicable
• Sponsor Type: NIH

Study Record Dates

• First Submitted: October 22, 2002
• First Posted: October 23, 2002
• Study Start: October 1, 2002
• Study Completion: April 1, 2003
• Last Updated: March 4, 2008

Record last verified: 2003-04

Locations

US (1)