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

June 30, 2017 updated by: National Human Genome Research Institute (NHGRI)

The Experiences of Genetics Patients With Visible Differences Who Facilitate Teaching in Genetics Clinics

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

Study Overview

Status

Completed

Conditions

Detailed 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 Type

Observational

Enrollment

30

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Maryland
      • Baltimore, Maryland, United States, 21205
        • Johns Hopkins University

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

Yes

Genders Eligible for Study

All

Description

  • INCLUSION CRITERIA:

    1. Seen in a genetics clinic or by a genetics professional in the past 5 years.
    2. Self-reported obvious physical difference or deformity.
    3. English speaking.

EXCLUSION CRITERIA:

  1. Younger than 18 years.
  2. Non-visible or absent physical difference of deformity.
  3. Cognitively-impaired or incompetent.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

National Human Genome Research Institute (NHGRI)

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

March 29, 2006

Study Completion

March 31, 2007

Study Registration Dates

First Submitted

June 19, 2006

First Submitted That Met QC Criteria

June 19, 2006

First Posted (Estimate)

June 21, 2006

Study Record Updates

Last Update Posted (Actual)

July 2, 2017

Last Update Submitted That Met QC Criteria

June 30, 2017

Last Verified

March 31, 2007

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • 999906130
  • 06-HG-N130

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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