Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy

Abstract

Findings highlight the need to improve community understanding and support for those affected by epilepsy and to promote informed risk assessment and communication amongst patients, families and health professionals. People bereaved by epilepsy require both immediate and long-term epilepsy-specific information and support from professionals, informal communities and peer supporters.

Epilepsy misconceptions and stigma reduction: Current status in Western countries

“…For example, saying “epilepsy can kill” is an important message for PWE who are at risk of Sudden Unexpected Death in Epilepsy (SUDEP). 63 However, portraying epilepsy as a lethal condition is unlikely to reduce stigma. For example, one could imagine that employers might be less likely to hire PWE if they think a person can die while having a seizure at work.…”

Knowledge and attitudes about epilepsy: A survey of high school students in Germany

“…Other studies showed that the possible fatal outcome of a seizure is not known to a considerable amount of participants [5,10]. Even many people who knew someone with epilepsy were not aware of the deadly hazards [21]. Further education should raise awareness of deadly hazards of epilepsy, but at the same time not overemphasise them.…”

Discussing sudden unexpected death in epilepsy with children and young people with epilepsy and their parents/carers: A mixed methods systematic review

“…Discussing SUDEP risk is an emotive subject. It has been reported that patients and families want to be told what SUDEP is, and the risk factors and riskreduction measures that can be taken [7][8]. However, there does not appear to be consensus from healthcare professionals on whether all patients, or selected patients (e.g.…”