Knowledge Before Loss: SUDEP Counseling and Its Influence on Parental Bereavement

A recent study published by Dr. Tokatly Latzer, Dr. Phillip Pearl from Boston Children's Hospital and others examined the impact on discussions around SUDEP and grief.

Sudden unexpected death in epilepsy (SUDEP) remains the leading cause of seizure-related mortality, yet discussions about this risk are often limited in clinical practice.  In this qualitative study, 51 bereaved parents participated in in-depth interviews exploring their experiences, grief processes, coping strategies, and prior awareness of SUDEP.  Parents who had not been informed about SUDEP before their child’s death described more severe and prolonged grief, often accompanied by guilt, anger, and distrust toward the medical system, whereas those with prior awareness reported a comparatively moderated traumatic response and greater acceptance.  Prior knowledge appeared to provide a degree of emotional preparedness that influenced how parents processed the loss.  These findings highlight the need for proactive SUDEP counseling and improved post-event professional responses to better support families.