title: Avoiding parental distress when discussing about SUDEP: the Albanian experience.
abstract: BACKGROUND
  Pediatric SUDEP (Sudden Unexpected Death in Epilepsy) is an uncommon event, but its unpredictability has rendered the issue very important to be addressed, under all points of view: medical, moral and legal one. The death of a child has been always considered a dramatic event for the Albanian families, and when it overcomes unexpectedly the emotional reactions might even be more exaggerated.
  
  
  CONCLUSIONS
  Debates about truth-telling on the prognosis, or even on the probability of a sudden death related to the main diagnosis (epilepsy) are old and controversial. Risk factors for SUDEP have been formulated and strategies to confront them have been put in place; however medical (pharmacological) compliance seems by large the most important protective factor.
  
  
  CONCLUSIONS
  To our opinion, disclosing the risk of a sudden death to the family on a child suffering from epilepsy is a necessary act; timing and ways of disclosure are details that need to be refined case-by-case, in a situation where a general consensus or guidelines are lacking. A step-by-step approach and a gradual informing are helpful and psychologically acceptable from the parents or other relatives.
authors: Service of Neurology, University Hospital Centre Mother Theresa, Tirana, Albania.
authors: Jera
authors: J
authors: Kruja
authors: Gentian
authors: G
authors: Vyshka
mesh_terms: D000415:Albania; D002648:Child; D003645:Death, Sudden; D004827:Epilepsy / Q000401:mortality*; D006801:Humans; D010290:Parents / Q000193:education* / Q000523:psychology; D012307:Risk Factors; D013315:Stress, Psychological / Q000209:etiology / Q000517:prevention & control; D014342:Truth Disclosure