title: Experiences of informational needs and received information following a prenatal diagnosis of congenital heart defect.
abstract: OBJECTIVE
  To explore the need for information and what information was actually received following prenatal diagnosis of a congenital heart defect, in a country where termination of pregnancy beyond 22 weeks of gestation is not easily possible because of legal constraints.
  
  
  METHODS
  Twenty-six Swedish-speaking pregnant women (n = 14) and partners (n = 12) were consecutively recruited for semi-structured telephone interviews following the prenatal diagnosis of a congenital heart defect. Data were analyzed using content analysis.
  
  
  RESULTS
  Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Objective, honest, and detailed information about multiple subjects were needed, delivered repeatedly, and supplemented by written information/illustrations. Eighteen respondents had used the Internet to search for information and identified issues involving searching difficulties, low quality, and that it was too complex, insufficient, or unspecific. Those who terminated their pregnancy criticized that there was a lack of information about termination of pregnancy, both from health professionals and online sources, resulting in unanswered questions and unpreparedness.
  
  
  CONCLUSIONS
  Individuals faced with a prenatal diagnosis of a congenital heart defect need individualized and repeated information. These needs are not all adequately met, as individuals are satisfied with the specialist consultation but left with unanswered questions regarding pregnancy termination. © 2016 John Wiley & Sons, Ltd.
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 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: D000028:Abortion, Induced; D000328:Adult; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D008297:Male; D020380:Needs Assessment; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011247:Pregnancy; D037841:Pregnant People; D036301:Qualitative Research; D018454:Spouses; D013548:Sweden; D055815:Young Adult