Siblings of Children with Long QT Syndrome: Relationships and Coping

Long QT syndrome (LQTS) is a congenital heart disorder, usually diagnosed in childhood, that may lead to cardiac arrest, seizures, syncope, and sudden death. The birth of a child with LQTS, as well as the social, physical, and psychological functioning of the affected child, can have a significant impact on the family. The family stress associated with having a child with any disability or chronic illness is likely to affect the lives of siblings. The lack of research on the effects of having a sibling with long QT syndrome on individuals who do not have LQTS provided the rationale for the current study. A qualitative research design was utilized to determine if and how LQTS impacts quality of life of unaffected siblings of children with long QT syndrome. Two themes emerged: relationships and coping strategies. A majority of the participants maintained positive relationships with their parents and affected siblings and had friends/support systems both within and outside of the home. Participants coped with the diagnosis and management of their siblings’ LQTS by trusting the medical team and obtaining information about the illness. A majority of the participants did not indicate that their lives differed greatly from siblings in other families not affected by LQTS