Date of Award

2015

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

J. Erin Demo

Abstract

Sudden arrhythmic death syndrome (SADS), where death is secondary to cardiac arrhythmia, is associated with several cardiac ion channelopathies, including long QT syndrome and Brugada syndrome, as well as cardiomyopathies such as hypertrophic cardiomyopathy and dilated cardiomyopathy. Many of these conditions often present in childhood or adolescence. This study investigates how diagnoses of cardiac diseases associated with SADS are communicated within families. A questionnaire was distributed through cardiac disease-focused support groups and organizations. Data from 114 parents who have a child with a SADS condition were used for analysis. Based on the responses, parents explained the risk of SADS in a straightforward manner and related the risk to the importance of compliance with the prescribed treatment. Participants also found it difficult to determine and enforce lifestyle modifications, manage the families’ emotional reactions, convey the seriousness of the information without scaring their children, and discuss the risk of SADS during these conversations. Concerns regarding disease progression, length and quality of life, and treatment failures and complications were also expressed. Healthcare providers, the Internet, other affected people, visual aids, and personal experience were all reported to be helpful for discussing the SADS condition with their children. Services and resources that were requested were children’s support groups, a counselor or psychologist, and child-oriented materials. Increased understanding of how families discuss children’s diagnosis of SADS conditions will equip healthcare providers with the information to address parental concerns and help facilitate discussion of the condition between parents and their children.

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