Parents' Coping with Children's Newly Diagnosed Long-QT Syndrome: A Qualitative Study of the Function and Utilization of an Online User Group
Date of Submission
Doctor of Psychology (PsyD)
Robert A. DiTomasso, PhD, ABPP, Chair
Stephanie H. Felgoise, PhD, ABPP, Chairperson
Stephen R. Poteau, PhD
Susan Panichelli Mindel, PhD
Long QT syndrome is a sudden death syndrome that occurs in about 1 in 2,000 births. LQTS is caused by genetic mutations that affect the electrophysiology of the heart, resulting in a prolonged QT interval and possible cardiac arrhythmia, syncope or sudden death. Treatments include medications, implantable cardioverter defibrillators and activity restrictions. Little research exists regarding the psychosocial factors of the illness or the ways in which families cope with diagnosis and management of the chronic illness. The current study used archival data from an online user group. Participants were members of the group who discussed concerns related to LQTS. Qualitative methods were used to investigate the function and utilization of the online user group. Nine participants were followed over four years as they coped with the psychosocial challenges of LQTS. This study was the first to examine, specifically, the function and utilization trends of the online user group. Results found that functions included seeking connection and normalization, seeking emotional support and seeking information regarding parenting children of LQTS. Utilization trends changed over time and demonstrated role reversals from seeking to providing behaviors. The grounded method generated a theory that LQTS creates additional psycho-social-emotional demands on parents. When these demands exceed the resources of the current social-cultural milieu, additional resources such as online user groups are needed. Results further suggest that utilization of an online user group for LQTS may support healthy emotional coping through peer support from those with similar experiences. Further research evaluating additional resources for meeting the needs of families coping with a new diagnosis of LQTS is warranted.
Burns-Pentecost, Allison, "Parents' Coping with Children's Newly Diagnosed Long-QT Syndrome: A Qualitative Study of the Function and Utilization of an Online User Group" (2013). PCOM Psychology Dissertations. 255.