Parents’ Prior Awareness of SUDEP Profoundly Impacts Their Perceived Trauma, Grief Form, and Coping Strategies: Call for a Paradigm Shift in SUDEP Practice
Itay Tokatly Latzer1, Daniel Friedman2, David Williams1, Gardiner Lapham3, Alison Kukla3, Orit Karnieli-Miller4, PHILLIP PEARL5
1Boston Children's Hospital, 2NYU Langone Medical Center, 3PAME, 4Medical Education, Tel-Aviv University, 5Boston Children'S Hospital
Objective:
To explore the in-depth perspectives of parents who have lost a child to SUDEP, focusing on their experiences, grief, and coping strategies, while factoring in their demographic and clinical features, including their prior awareness of SUDEP.
Background:
Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of seizure-related deaths in people with epilepsy. Despite evidence that SUDEP counseling does not cause stress, improves treatment adherence, and empowers people with epilepsy and their caregivers, it remains under-discussed. There has been no systematic investigation of how demographics, clinical factors, and prior SUDEP awareness influence trauma perception, grief, and coping in bereaved parents.
Design/Methods:
This qualitative study involved in-depth semi-structured interviews with 51 parents of 43 children who died from SUDEP. Thematic analysis of transcript data followed an immersion/crystallization qualitative methodology, employing an iterative consensus-building process.
Results:
Of the 51 participating parents, 27 reported being unaware of SUDEP beforehand, while 24 reported awareness. These groups shared similar demographics and clinical characteristics. However, "unaware" parents expressed more intense trauma and prolonged maladaptive grief, characterized by guilt, extreme anger, and medical distrust. In contrast, "aware" parents described mitigated trauma, with less guilt- and anger-ridden grief, and reduced reliance on specialized support groups. Prior SUDEP awareness provided emotional preparation, buffering the devastating reality and fostering agency and acceptance. Another theme highlighted struggles parents faced immediately post-SUDEP, particularly with law enforcement and treating physicians. Unanimously, parents emphasized the paramount importance of counseling about the known relationship between epilepsy and SUDEP.
Conclusions:
Prior awareness of SUDEP (or lack thereof) has complex and far-reaching effects on the subsequent parental perceived trauma, grief, and coping processes. Furthermore, emergency responders, official personnel, and treating physicians may mishandle the aftermath of SUDEP. This study’s findings strongly advocate for increasing proactive SUDEP counseling to mitigate the traumatic impact and subsequent grieving process when SUDEP occurs.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.