Abstract Details

Title Parents’ Prior Awareness of SUDEP Profoundly Impacts Their Perceived Trauma, Grief Form, and Coping Strategies: Call for a Paradigm Shift in SUDEP Practice

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) P6 - Poster Session 6 (5:00 PM-6:00 PM)

Poster/Presentation
Number 11-001

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.

Authors/Disclosures
Alison Kukla (Partners Against Mortality in Epilepsy) PRESENTER	Alison Kukla has received personal compensation for serving as an employee of Epilepsy Foundation of America. Alison Kukla has received personal compensation for serving as an employee of Dartmouth Health. Alison Kukla has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Biosciences Inc. Alison Kukla has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurelis. Alison Kukla has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant with International Bureau for Epilepsy. Alison Kukla has received personal compensation in the range of $50,000-$99,999 for serving as a PAME, Senior Advisor with American Epilepsy Society.
Itay Tokatly Latzer, MD (Boston Children's Hospital)	Dr. Tokatly Latzer has nothing to disclose.
Daniel Friedman, MD, FAAN (NYU Langone Medical Center)	The institution of Dr. Friedman has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Epilepsy Study Consortium (non-profit). Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Meili Technology. Dr. Friedman has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurelis. Dr. Friedman has stock in Neuroview Technology. The institution of Dr. Friedman has received research support from NIH. The institution of Dr. Friedman has received research support from CDC. The institution of Dr. Friedman has received research support from Epitel. The institution of Dr. Friedman has received research support from Neuropace. The institution of Dr. Friedman has received research support from Rapport Therapeutics. Dr. Friedman has received intellectual property interests from a discovery or technology relating to health care. Dr. Friedman has received intellectual property interests from a discovery or technology relating to health care. Dr. Friedman has received publishing royalties from a publication relating to health care. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Speaker Honorarium with SK Life Sciences. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Speaker Honorarium with AAN. Dr. Friedman has received personal compensation in the range of $500-$4,999 for serving as a Travel Reimbursement with Epilepsy Foundation of America.
David N. Williams, PhD	Dr. Williams has nothing to disclose.
Gardiner O. Lapham, RN	Mrs. Lapham has nothing to disclose.
Orit Karnieli-Miller, PhD	Prof. Karnieli-Miller has nothing to disclose.
PHILLIP L. PEARL, MD, FAAN (Boston Children'S Hospital)	Dr. Pearl has received personal compensation in the range of $500-$4,999 for serving as a Consultant for PTC Therapeutics. Dr. Pearl has received publishing royalties from a publication relating to health care. Dr. Pearl has received publishing royalties from a publication relating to health care. Dr. Pearl has received publishing royalties from a publication relating to health care. Dr. Pearl has received publishing royalties from a publication relating to health care.

��ɫ��

��ɫ��