Authors :
Presenting Author: Itay Tokatly Latzer, MD – Boston Children's Hospital
Orit Karnielli-Miller, PhD – Gray School of Medicine, Gray Faculty of Medical and Health Sciences, Tel-Aviv University, Tel Aviv, Israel.
David Williams, PhD – Harvard T.H. Chan School of Public Health, Boston, MA, USA.
Gardiner Lapham, MPH, RN – Partners Against Mortality in Epilepsy (PAME)
Alison Kukla, MPH – Partners Against Mortality in Epilepsy, Chicago, IL, United States
Daniel Friedman, MD – NYU Langone Medical Center
Phillip Pearl, MD – Boston Children's Hospital & Harvard Medical School
Rationale:
Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of seizure-related death among individuals with epilepsy. Despite this, counseling practices among healthcare providers and awareness among people with epilepsy and their caregivers remain strikingly low. This study aimed to explore the impact of SUDEP awareness on the experiences and viewpoints, as well as the grieving patterns and coping mechanisms of parents bereaved by SUDEP.
Methods:
We conducted semi-structured interviews via video platform with 51 parents of 43 children who died from SUDEP. Transcripts were analyzed using immersion/crystallization qualitative methodology with Dedoose software, employing an iterative consensus-building process. Thematic analysis identified parents' perspectives, grief narratives, coping strategies, and perceived needs following SUDEP.
Results:
Two main themes emerged from the thematic analysis, reflecting contrasting parental narratives based on prior awareness of SUDEP, despite their similar demographics and clinical features of their deceased children. While all parents (n=51) endured profound sorrow, a sense of unfairness, and upheaval in their lives, those unaware of SUDEP (n=27) faced intensified trauma, challenging interactions with authorities, and prolonged, complicated grief fraught by anger, guilt, isolation, and medical distrust. SUDEP-specific support groups were key to coping for these parents, as they felt that only others sharing their experiences could truly understand the nuances of their devastating loss. Conversely, parents with prior SUDEP knowledge (n=24) reported more acceptance and closure. Their pre-existing awareness of SUDEP fostered adaptation, as they expressed a mitigated trauma, positive physician interactions, and shorter, less guilt- and anger-ridden grief, relying less on specialized support groups.
Conclusions:
While prior SUDEP awareness doesn’t generate "anticipatory grief," it offers a degree of emotional preparation that buffers the devastating reality and gives the parents a sense of agency and a foundation for acceptance. Physicians may be reluctant to discuss SUDEP to shield epilepsy patients and maintain their perceived normalcy in the face of epilepsy-related stigma. However, an open dialogue about SUDEP’s possibility and risks can reduce trauma and complicated grief that often follow its non-disclosure. Limited awareness of SUDEP perpetuates a vicious cycle of under-reporting by medical examiners, inadequate handling by emergency and official personnel, misperception of low occurrence rates, insufficient physician counseling, and a lack of established support services for bereaved parents, ultimately hindering research. This study’s findings strongly advocate for a paradigm shift in SUDEP-related practices across multiple disciplines, including legislation efforts, with a focus on both maximizing the prevention efforts of these tragic deaths and, when they do occur, alleviating their traumatic impact and the subsequent grieving processes.
Funding: No funding was received for this study.