Experiences of Genetics Patients With Visible Abnormalities Who Facilitate

Status Completed

Clinical Trial Summary

This study will describe the experience of patients with visible physical abnormalities in the genetics clinic when they are involved in teaching others about their condition. Information from this study may be used to enhance educational experiences in genetics clinics.

Patients 18 years of age and older with a visible physical anomaly who have been seen by a genetics professional in the past 5 years may be eligible for this study.

In a tape-recorded telephone interview, patients are asked about the following:

- Their experiences when visiting the genetics clinic

- The circumstances under which they have been approached to participate in teaching others

- Their perspective on specific teaching behaviors used in genetic consultations, and how this perspective is affected by their perception of their own visible difference

- The benefits and downsides of being involved in teaching others

- The circumstances under which they feel comfortable being approached by genetics providers to help teach others about their condition

- The conditions or circumstances that make some individual teaching experiences better or worse than others

Clinical Trial Description

It is common for genetics patients to facilitate teaching of others during the course of their genetics exam. Patient response to serving as a teaching case has been studied only on a limited extent. This study proposes to qualitatively explore the ways in which taking on a teaching role in a genetics clinic is experienced by patients with visible differences.

Qualitative telephone interviews with approximately 30 genetics patients with visible differences will be conducted. The interviews will be semi-structured and an interview guide will be loosely followed. Interviews will be recorded and transcripts of the interviews will be coded for analysis. A typology of common themes will be compiled and reported. Information collected through these interviews will improve understanding of the phenomenon of patients in educator roles, relate experiences to patient expectations and will fill a gap in the published literature. It is additionally hoped that results of this study may inform the development of new recommendations to enhance educational experiences in genetics clinics. ;

Study Design

Related Conditions & MeSH terms

Learning

Clinical Trial Details

NCT number	NCT00341718
Study type	Observational
Source	National Institutes of Health Clinical Center (CC)
Contact
Status	Completed
Phase	N/A
Start date	March 29, 2006
Completion date	March 31, 2007

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Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

Experiences of Genetics Patients With Visible Abnormalities Who Facilitate Teaching in Genetics Clinics

Clinical Trial Summary

Clinical Trial Description

Study Design

Related Conditions & MeSH terms