The sudden unexpected death in epilepsy grief study.

OBJECTIVES

To explore the evolution of the grief experience following Sudden Unexpected Death in Epilepsy (SUDEP) and identify factors that assist the bereaved in coping with their loss.

METHODS

A survey formulated by a multidisciplinary team gathered information gathered information on decedent and respondent demographics, epilepsy details, circumstances surrounding death, postmortem experiences, descriptions of grief overtime (from 3 months to > 10 years post death), insights into coping strategies and recommendations for assisting the bereaved.

RESULTS

A total of 206 participants completed the survey (predominantly middle-aged white females who were parents of the deceased). Most respondents (69.2 %) were unaware of SUDEP prior to the death and strongly desired to have had prior information. Negative impacts on relationships and mental health were highest at three months post-loss but gradually improved over time; feelings of sadness persisted while anger and guilt decreased, and acceptance increased. Interactions with understanding peers, supportive family or friends, and professional counseling were identified as most helpful, alongside clear communication and support from medical professionals and advocacy groups.

CONCLUSIONS

This study highlights the profound and evolving nature of grief following SUDEP, describes the importance of SUDEP disclosure as part of comprehensive epilepsy care, and illustrates the need for ongoing and dynamic support for the bereaved. Interpretation of the findings is limited as the respondents were predominantly middle-aged white females who were parents of the deceased.