title: 'If you're gonna die, you're gonna die': Young adults' perceptions of sudden unexpected death in epilepsy.
abstract: OBJECTIVE
  To explore the views and experiences of young adults with epilepsy on the risks associated with, and information giving in relation to sudden unexpected death in epilepsy (SUDEP).
  
  
  METHODS
  In-depth interviews with 27 young adults (aged 18-29 years) with epilepsy.
  
  
  RESULTS
  Participants reported everyday experiences of seeking to control the risk of seizure occurrence or injury from seizures. In contrast, SUDEP was reported in more fatalistic terms as a risk that was considered to be largely unpreventable. Participants stated that information on SUDEP should be given to those with epilepsy, in a consultation, at or soon after the diagnosis, though clinical judgement on patients' readiness was considered important in timing decisions. Many had a limited, sometimes incorrect understanding of SUDEP, yet were satisfied with the information they had received. Very few engaged in independent information seeking on SUDEP, and many deliberately avoided searching for further information.
  
  
  CONCLUSIONS
  Our findings suggest that SUDEP was bracketed off from other aspects of participants' epilepsy, in terms of the meanings attributed to it, perceptions of risk status and ways of coping. SUDEP is a case through which to consider how people give meaning to information about risk of sudden death related to chronic conditions.
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK Jeni.harden@ed.ac.uk.
authors.forename: Jeni
authors.initials: J
authors.lastname: Harden
authors.affiliation: Epilepsy Scotland, Glasgow, UK.
authors.forename: Anissa
authors.initials: A
authors.lastname: Tonberg
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK Royal Hospital for Sick Children, Edinburgh, UK.
authors.forename: Richard F
authors.initials: RF
authors.lastname: Chin
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK Royal Hospital for Sick Children, Edinburgh, UK.
authors.forename: Ailsa
authors.initials: A
authors.lastname: McLellan
authors.affiliation: Western General Hospital, Edinburgh, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Duncan
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D003645:Death, Sudden; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010465:Perception; D036301:Qualitative Research; D055815:Young Adult
keywords: Epilepsy; qualitative research; risk; sudden death; sudden unexpected death in epilepsy