title: Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy.
abstract: OBJECTIVE
  This study explores the experiences and needs of bereaved family and friends following an epilepsy-related death in Australia.
  
  
  METHODS
  An online survey was used to collect demographic details of the person with epilepsy, epilepsy status, time since the death, satisfaction with service providers at the time of death, follow-up support, perceptions on how well the death was explained, and gaps in support or services.
  
  
  RESULTS
  The survey was completed by 101 respondents describing 90 deceased individuals. Mean age at death was 32.1 years, with causes of death including SUDEP, epilepsy, drowning, cardiac arrest, asphyxiation, and motor vehicle accidents. Over half of the respondents indicated that they did not know, prior to the death, people could die of epilepsy. In addition, 38% indicated the death had not been adequately explained to them. Comments revealed services and supports which should be available following a death, and recommendations for existing epilepsy support services which might help to prevent future deaths.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Disability & Community Inclusion, School of Health Sciences, Flinders University, GPO Box 2100, Adelaide, South Australia 5001, Australia. Electronic address: Michelle.Bellon@flinders.edu.au.
authors.forename: Michelle
authors.initials: M
authors.lastname: Bellon
authors.affiliation: The Department of Medicine, The Melbourne Brain Centre, The Royal Melbourne Hospital, The University of Melbourne, 4 Central, Grattan Street, Parkville, Victoria 3052, Australia; SUDEP Action, PO Box 451, Seymour, Victoria 3660, Australia. Electronic address: rpanelli@unimelb.edu.au.
authors.forename: Rosemary June
authors.initials: RJ
authors.lastname: Panelli
authors.affiliation: Disability & Community Inclusion, School of Health Sciences, Flinders University, GPO Box 2100, Adelaide, South Australia 5001, Australia. Electronic address: Fiona.rillotta@flinders.edu.au.
authors.forename: Fiona
authors.initials: F
authors.lastname: Rillotta
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia / Q000453:epidemiology; D001601:Bereavement; D002648:Child; D003142:Communication; D003643:Death; D004827:Epilepsy / Q000401:mortality; D005190:Family / Q000523:psychology*; D005260:Female; D033062:Friends / Q000523:psychology*; D006266:Health Education; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D012306:Risk; D012944:Social Support; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult
keywords: Bereavement; Death; Epilepsy; Patient education; Risk communication