Highlights
- •Several aspects of the day-to-day lives of bereaved relatives were affected by SUDEP.
- •Advocacy work related to raising awareness about epilepsy and SUDEP was unique to this group.
- •Guidelines on SUDEP should ideally include recommendations for trauma-informed support to the bereaved relatives as well.
Abstract
Purpose
To understand the experiences of bereaved relatives of individuals who passed due
to sudden unexpected death in epilepsy (SUDEP) and to explore the impacts of death
in their lives.
Methods
The principles of fundamental qualitative description informed all design decisions.
Stratified purposeful sampling included 21 bereaved relatives (parent, sibling, or
spouse/partner), aged at least 18 years, of persons who passed away because of SUDEP.
In-depth one-to-one interviews were conducted. Directed content analysis was used
to code, categorize, and synthesize the interview data.
Results
There was some criticism of emergency response and medical professionals involved
in providing insensitive or poor care immediately after SUDEP occurred. Personal hardships
described by participants following SUDEP included loss of personal identity, feeling
depressed, experiencing guilt, having panic attacks, requiring therapy, as well as
having difficulty with anniversaries, dates, and cleaning up a child’s room. Bereaved
spouses and parents in particular spoke of experiencing challenges in maintaining
other relationships following the death. Some participants spoke of experiencing increased
financial hardships. Ways of coping included keeping oneself busy, honoring the memory
of the loved one, relying on friends and families, and engaging in advocacy/community
work, including raising awareness on epilepsy and SUDEP.
Conclusions
Sudden unexpected death in epilepsy affected several aspects of the day-to-day lives
of bereaved relatives. Though methods of coping were similar to the usual strategies
adopted by all bereaved relatives, advocacy work related to raising awareness about
epilepsy and SUDEP was unique to this group. Guidelines on SUDEP should ideally include
recommendations for trauma-informed support and assessment for depression and anxiety
to the bereaved relatives as well.
Keywords
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References
- Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention.Lancet Neurol. 2016; 15: 1075-1088
- Advances in sudden unexpected death in epilepsy.Acta Neurol Scand. 2022; 146: 716-722
- Sudden unexpected death in epilepsy: terminology and definitions.Epilepsia. 1997; 38: S6-S8
- Recognizing and preventing epilepsy-related mortality: A call for action.Neurology. 2016; 86: 779-786
- The fundamental paradox in the grief literature: a critical reflection.Omega. 2007; 55: 199-218
- Circumstances of death in sudden death in epilepsy: interviews of bereaved relatives.J Neurol Neurosurg Psychiatry. 1998; 64: 349-352
- SUDEP: To discuss or not? Recommendations from bereaved relatives.Epilepsy Behav : E&B. 2016; 56: 20-25
- Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy.Seizure. 2015; 29: 162-168
- Coroner and medical examiner documentation of sudden unexplained deaths in epilepsy.Epilepsy Res. 2006; 68: 137-143
- Epilepsy and seizure-related deaths: Mortality statistics do not tell the complete story.Epilepsy Behav : E&B. 2019; 98: 266-272
- National Association of Medical Examiners position paper: Recommendations for the investigation and certification of deaths in people with epilepsy.Epilepsia. 2018; 59: 530-543
- SUDEP and Grief: Overview and Current Issues.Psychiatry Q. 2019; 90: 129-136
- Sudden Unexpected Death in Epilepsy – An Overview of Current Understanding and Future Perspectives.Eur Neurol Rev. 2012; 1: 67-71
Kennelly C, Riesel J. Sudden death and epilepsy: the views and experiences of bereaved relatives and carers. In: Epilepsy Bereaved: London, UK; 2002.
- Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths.Epilepsy Behav : E&B. 2020; 103106416
- The burden of loss: unexpected death of a loved one and psychiatric disorders across the life course in a national study.Am J Psychiatry. 2014; 171: 864-871
- SUDEP, the aftermath: supporting the bereaved.Pract Neurol. 2017; 17: 489-492
- Knowing the risk of SUDEP: two family's perspectives and The Danny Did Foundation.Epilepsia. 2014; 55: 1495-1500
- A personal view.Epilepsia. 1997; 38: S3-S5
- What aspects of post-traumatic growth are experienced by bereaved parents? A systematic review.Eur J Psychotraumatol. 2018; 9: 1506230
RamachandranNair R, Jack SM, Madhava AR, Shapiro MJ. SUDEP: What do patients want to know. In: American Epilepsy Society Annual Meeting; 2014.
- SUDEP: what do parents want to know?.Epilepsy Behav. 2013; 29: 560-564
- “Untold Distress” - How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?.Epilepsy Behav : E&B. 2023; 139109071
Article info
Publication history
Published online: March 06, 2023
Accepted:
February 23,
2023
Received in revised form:
February 22,
2023
Received:
December 23,
2022
Identification
Copyright
© 2023 Elsevier Inc. All rights reserved.
