title: [Receiving the diagnosis of Down syndrome: what do the parents think?].
abstract: BACKGROUND
  Having a child with Down syndrome (DS) is usually unexpected and stressful.
  
  
  OBJECTIVE
  To describe the experiences of parents of children with DS at the time of diagnosis.
  
  
  METHODS
  A self-administered survey was answered by 345 parents (62% women) with an offspring with DS.
  
  
  RESULTS
  Eighty four percent of parents received a postnatal diagnosis of DS, 32.3% were informed of the diagnosis in the presence of his or her partner and 19.3%o received some form of printed material regarding DS. Fifty six percent of respondents considered that the delivery of the diagnosis was inadequate. Factors associated with an overall positive experience were prenatal diagnosis (Odds Ratio (OR) 3.91 (95% Confidence Intervals (CI) 2.06-7.44)) and the presence of both parents at the time of the delivery of the diagnosis (OR 1.84 (95%> CI 1.16-2.91)). Fifty three percent of respondents believe that prenatal diagnosis of DS is preferable.
  
  
  CONCLUSIONS
  The majority of parents are unsatisfied with the way the diagnosis of DS is delivered. Efforts should be made to educate health personnel regarding the delivery of the diagnosis of SD, to foster opportunities for prenatal diagnosis and to improve the delivery of printed material.
authors.affiliation: Centro de Especialidades Pediátricas, Red de Salud UC, Santiago, Chile.
authors.forename: María A
authors.initials: MA
authors.lastname: Paul
authors.affiliation: Centro de Especialidades Pediátricas, Red de Salud UC, Santiago, Chile.
authors.forename: Jaime
authors.initials: J
authors.lastname: Cerda
authors.affiliation: Departamento de Salud Pública, Red de Salud UC, Santiago, Chile.
authors.forename: Catalina
authors.initials: C
authors.lastname: Correa
authors.affiliation: División de Pediatría, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile.
authors.forename: Macarena
authors.initials: M
authors.lastname: Lizama
mesh_terms: D000328:Adult; D003142:Communication; D004314:Down Syndrome / Q000175:diagnosis / Q000523:psychology*; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D035622:Parental Notification; D010290:Parents / Q000523:psychology*; D011296:Prenatal Diagnosis / Q000523:psychology; D011368:Professional-Family Relations; D011446:Prospective Studies; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D055815:Young Adult