Date of Submission


Degree Type


Degree Name

Doctor of Psychology (PsyD)



Department Chair

Robert A. DiTomasso, Ph.D., ABPP

First Advisor

Stephanie Felgoise, Ph.D., ABPP, Chairperson

Second Advisor

Victoria L. Vetter, M.D.

Third Advisor

Petra Kottsieper, Ph.D.


Long QT syndrome (LQTS) is a life-threatening genetic arrhythmia syndrome. LQTS is caused by mutations in the ion channel of the heart resulting in ventricular arrhythmias that predispose individuals to syncope and cardiac arrest. The risk of sudden death is heightened in undiagnosed children and adolescents. Effective treatments for controlling LQTS are available, although they often impose significance lifestyle limits. Limited psychosocial resources are available to help families cope with the losses related to LQTS. This qualitative research study focuses on affected individuals’ experiences of loss and grief related to LQTS. The study used archival data obtained from an internet message board dedicated to LQTS. The primary objective of this study was to describe the individual’s experiences of loss and grief as a means of assisting health care professionals to (a) identify potential issues related to loss that result from a diagnosis of LQTS, (b) recognize potential chronic grief reactions that families may result, (c) and recognize the need for resources to help families cope with loss.