title: Information following a diagnosis of congenital heart defect: experiences among parents to prenatally diagnosed children.
abstract: BACKGROUND
  Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD.
  
  
  METHODS
  Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis.
  
  
  RESULTS
  Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet.
  
  
  CONCLUSIONS
  Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.
authors.affiliation: Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
authors.forename: Tommy
authors.initials: T
authors.lastname: Carlsson
authors.affiliation: Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Gunnar
authors.initials: G
authors.lastname: Bergman
authors.affiliation: Department of Scandinavian Languages, Uppsala University, Uppsala, Sweden.
authors.forename: Ulla
authors.initials: U
authors.lastname: Melander Marttala
authors.affiliation: Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
authors.forename: Barbro
authors.initials: B
authors.lastname: Wadensten
authors.affiliation: Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
authors.forename: Elisabet
authors.initials: E
authors.lastname: Mattsson
mesh_terms: D022126:Access to Information / Q000523:psychology*; D000328:Adult; D002675:Child, Preschool; D005220:Fathers / Q000523:psychology*; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D007223:Infant; D020407:Internet; D008297:Male; D009035:Mothers / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D011379:Prognosis; D055815:Young Adult