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
Victoria L Vetter, MD, MPH
Congenital long QT syndrome (LQTS) is a genetic disorder of the heart that may result in syncope, seizures, and sometimes sudden cardiac death. The wide-ranging clinical presentation of LQTS can lead to fear and uncertainty in families of children diagnosed with LQTS, while treatment and lifestyle modifications can significantly reduce the level of risk. Despite the far-reaching implications of this syndrome on the lives of children and families, very little is known about the psychosocial aspects of having a child with this syndrome. The purpose of this qualitative study was to describe the experiences of fathers of children with LQTS and to investigate their concerns and ways of coping. Fathers’ responses to children’s LQTS have not been previously examined separate from the responses of mothers. A total of 13 fathers of children with LQTS participated in this study, six of whom took part in a one-to-one semi-structured interview and seven of whom completed an online questionnaire. Fathers experienced fear and confusion when their children were initially diagnosed with LQTS. Initial fears were moderated over time with increasing knowledge about LQTS, children’s positive response to treatment and management, and fathers’ perception of LQTS as a manageable condition. Background worries, however, remained related to the uncertain threat of LQTS-related symptoms developing in their children. The level of psychosocial stress that fathers experience over time may vary according to a number of LQTS-related and psychosocial variables, and fathers appeared to utilize a range of strategies to manage stress associated with their children’s LQTS.
Yarnell, Jodi, "Fathers of Children with Long QT Syndrome: Their Concerns and Ways of Coping" (2016). PCOM Psychology Dissertations. 380.