Date of Submission

2009

Degree Type

Dissertation

Degree Name

Doctor of Psychology (PsyD)

Department

Psychology

Department Chair

Robert A DiTomasso, PhD, ABPP, Chair, Department of Psychology

First Advisor

Stephanie H Felgoise, PhD, ABPP, Chairperson

Second Advisor

Virginia Burks Salzer, PhD

Third Advisor

Victoria L Vetter, MD

Abstract

Long QT syndrome (LQTS) is a life-threatening inherited cardiac condition. It is caused by a disturbance in the ion channel genes that control cardiac repolarization, resulting in ventricular arrhythmias that can lead to syncope, sudden cardiac arrest (SCA), or sudden cardiac death (SCD). Most deaths occur in children, adolescents, and young adults. Although congenital LQTS occurs in 1/3000 to 1/5000 individuals, to date, little research has been conducted on the psychosocial effects of LQTS. Mothers who are confronted with a new diagnosis of their children’s LQTS are likely to have never heard of the disease prior to diagnosis, and few psychosocial resources may be available. The aim of this research was to conduct a qualitative study that focuses on mothers’ coping abilities regarding the uncertainty of LQTS and how their quality of life is affected on a daily basis. Ten mothers were randomly selected and interviewed in a semistructured format. Each interview was audio taped and analyzed using a grounded theory method.

The primary objective of this study was to acquire descriptive data through qualitative analysis to assist mental health professionals and health care providers to (a) identify how mothers cope with the diagnosis of LQTS, (b) determine the effects of LQTS on the quality of life, (c) understand the role of uncertainty and unpredictability of LQTS in daily coping, (d) parenting challenges, (e) and identify effective problem-solving.

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