Date of Submission
Doctor of Psychology (PsyD)
Robert A DiTomasso, PhD, ABPP, Chair, Department of Psychology
Stephanie H Felgoise, PhD, ABPP, Chairperson
Susan Panichelli Mindel, PhD
Charmaine Chan, DO
Long QT syndrome (LQTS) is an inherited and potentially fatal disorder affecting approximately 1 in 2,000 people. Children often experience anxiety and a sense of loss of control as they try to manage the medical, social, and psychological stress that accompanies being diagnosed with LQTS. The present study utilized a qualitative research design to examine how children experience and live with long QT syndrome. Semistructured interviews were conducted with eight children between the ages of 7 to 12 who were diagnosed with LQTS. This period in a child’s life is very important for developing social skills and self-esteem as peers and teachers become more important to the child. Themes that emerged involved treatment, relationships, and social connectedness. Children communicated aspects of treatment that were important to them, such as the doctor-patient relationship, stress test, medication, going to the hospital, and lifestyle restrictions. Parental and peer relationships were also explored with regard to how much information should be known by the child, perceptions of worry, confiding in friends or keeping it private, and values of importance in a peer relationship. The children voiced fears about not being accepted and being treated differently and more specific fears, including people knowing about the diagnosis, having to answer questions about the heart monitor, and experiencing feelings of sadness and loneliness. The “Five Pillars of Adaptation for Long QT Syndrome” born from this research are developmental level and self-esteem, peer and social relationships, parental support, social problem-solving, and treatment and resources. They provide the fundamental elements though which we can learn how a child lives with long QT syndrome.
McElwaine, Patrick, "A Qualitative Study of How Children Experience and Live with Long QT Syndrome" (2015). PCOM Psychology Dissertations. 336.