Experiences of Genetics Patients With Visible Abnormalities 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

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Learning

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Johns Hopkins University

Baltimore, Maryland, 21205, United States

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

INCLUSION CRITERIA:

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

Exclusion criteria

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

Sponsors and collaborators

Lead sponsor

National Human Genome Research Institute (NHGRI)

Nih

Registry information

Official study title

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

Important dates

Study start: 2006
Study completion: 2007
First posted: Jun 21, 2006
Registry last updated: Jul 2, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed