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The sudden unexpected death in epilepsy grief study.
Jeffrey Buchhalter1, Catherine Andrews2, Jeanne Donalty3
1Buchhalter Consulting, PLLC 13030 N. 17(th) Place, Phoenix 85022, AZ, USA.
Epilepsy & Behavior : E&B
|February 17, 2026
Summary
Grief after Sudden Unexpected Death in Epilepsy (SUDEP) evolves over time, with sadness persisting. Support from peers, family, and professionals aids coping with SUDEP loss.
Area of Science:
- Epilepsy and Neurology
- Psychology and Grief Studies
Background:
- Sudden Unexpected Death in Epilepsy (SUDEP) is a significant concern in epilepsy care.
- Lack of awareness about SUDEP is common among affected families.
Purpose of the Study:
- To examine the progression of grief following SUDEP.
- To identify effective coping mechanisms for bereaved individuals.
Main Methods:
- A survey was administered to individuals who experienced SUDEP.
- Data collected included demographics, epilepsy details, circumstances of death, and grief experiences over time (3 months to over 10 years).
Main Results:
- Most participants were unaware of SUDEP before the death and desired prior information.
- Negative impacts on mental health and relationships were highest at 3 months, improving over time.
- Sadness persisted, while anger and guilt decreased; acceptance increased. Peer, family, and professional support were beneficial.
Conclusions:
- Grief following SUDEP is profound and dynamic.
- Disclosure of SUDEP is crucial for comprehensive epilepsy care.
- Continuous and adaptive support is essential for those bereaved by SUDEP.
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