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Identifying the Informational and Emotional Needs of Individuals with Brugada Syndrome and Their Families to Guide the Development of an Educational Resource

Chevalier, Amber (2010) Identifying the Informational and Emotional Needs of Individuals with Brugada Syndrome and Their Families to Guide the Development of an Educational Resource. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

PURPOSE: Brugada syndrome is an autosomal dominant arrhythmia condition caused by genetic mutations affecting the cardiac conduction system. It is characterized by an abnormal electrocardiogram pattern and a predisposition to syncope and sudden cardiac death. Penetrance is incomplete and expressivity varies greatly within families. This condition is endemic in Southeast Asia, but was described in North America and Europe in 1992. Due to its novelty and complexity there is a scarcity of informational resources. The first aim of this project was to gain insight from individuals and families with Brugada syndrome and to use this information to accomplish the second aim: an educational resource well-suited for families coping with Brugada syndrome. The public health relevance of this project reflects its application to genetic counseling: the development of patient educational resources involves a careful assembly of content and design with attention to patient needs. METHODS: Ten participants completed a questionnaire which addressed general understanding of the condition, personal experiences, terms and concepts related to Brugada syndrome, and individual perspectives. The responses to the questionnaire were used to help shape an educational resource. RESULTS: Analysis of the questionnaire responses revealed that some main concepts are well-understood by this study population, while there is considerable lack of understanding of other important concepts associated with Brugada syndrome. Overall participants expressed needs for more information and tools for coping with the condition. CONCLUSION: A two part educational resource was created to address these needs. A short introductory pamphlet was produced for use as an initial introduction to the condition and an in-depth resource called Brugada syndrome: A Guide for Families was created. The resources include patient-friendly explanations of symptoms, diagnosis, treatment, children, inheritance, genetic testing, and support resources.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Chevalier, Amberamber@cranberryfog.com
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairLondon, Barrylondonb@upmc.edu
Committee MemberBarmada, M Michaelbarmada@pitt.eduBARMADA
Committee MemberGrubs, Robin Ergrubs@pitt.eduRGRUBS
Date: 28 June 2010
Date Type: Completion
Defense Date: 31 March 2010
Approval Date: 28 June 2010
Submission Date: 1 April 2010
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: channelopathy; educational resource; sudden cardiac death; arrhythmia; Brugada syndrome; written patient materials; genetic counseling
Other ID: http://etd.library.pitt.edu/ETD/available/etd-04012010-084959/, etd-04012010-084959
Date Deposited: 10 Nov 2011 19:33
Last Modified: 15 Nov 2016 13:38
URI: http://d-scholarship.pitt.edu/id/eprint/6688

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