title: SUDEP: To discuss or not? Recommendations from bereaved relatives.
abstract: OBJECTIVE
  The overarching purpose of this descriptive and exploratory qualitative study was to understand the experiences of relatives of individuals whose deaths were identified as SUDEP and to explore their preferences regarding SUDEP counseling.
  
  
  METHODS
  The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 27 bereaved relatives (parent, sibling, spouse or child), aged at least 18 years, of 21 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 consensus among all participants that the risk of SUDEP should be discussed with patients by their healthcare providers. Relatives opted for information on SUDEP at the time of, or shortly following, the diagnosis of epilepsy. Neurologists were identified as the healthcare providers who should discuss SUDEP with patients during a face-to-face encounter, subsequently supplemented with written information. It was identified that, when discussing SUDEP, emphasis should be on the risk factors, possible preventive strategies, and the rarity of incidence.
  
  
  CONCLUSIONS
  The results of this study indicated that bereaved relatives wanted neurologists to inform patients about the risk of SUDEP, with optimal timing and setting of SUDEP counseling determined on a case-by-case basis.
authors.affiliation: Department of Pediatrics (Neurology), McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada. Electronic address: rnair@mcmaster.ca.
authors.forename: Rajesh
authors.initials: R
authors.lastname: Ramachandran Nair
authors.affiliation: School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1, Canada.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Jack
authors.affiliation: Department of Family Relations and Applied Nutrition, University of Guelph, Canada.
authors.forename: Sonya
authors.initials: S
authors.lastname: Strohm
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D032921:Consensus; D003376:Counseling; D003645:Death, Sudden / Q000453:epidemiology* / Q000517:prevention & control; D004827:Epilepsy / Q000150:complications* / Q000401:mortality*; D005190:Family; D005260:Female; D006117:Grief; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D010361:Patients; D010820:Physicians; D036301:Qualitative Research; D012307:Risk Factors; D055815:Young Adult
keywords: Counseling; Epilepsy; Qualitative research; Sudden unexpected death