title: Experiences of prenatal diagnosis and decision-making about termination of pregnancy: A qualitative study.
abstract: BACKGROUND
  Advances in genetic technologies and ultrasound screening techniques have increased the ability to predict and diagnose congenital anomalies during pregnancy. As a result more prospective parents than ever before will receive a prenatal diagnosis of a fetal abnormality. Little is known about how Australian women and men experience receiving a prenatal diagnosis and how they make their decision about whether or not to continue the pregnancy.
  
  
  OBJECTIVE
  This qualitative study aims to describe parental experiences and examine how best to provide support after a prenatal diagnosis.
  
  
  RESULTS
  Individual in-depth interviews were conducted with 102 women and men approximately six weeks post-diagnosis of fetal abnormality. Data were elicited using a narrative, chronological approach and women (n = 75) and a sample of male partners (n = 27) were separately interviewed. Thematic analysis, involving a rigorous process of qualitative coding, enabled iterative development and validation of emergent themes. Participants identified that the shock of the diagnosis can be lessened when good care is delivered, by provision of: clear, accurate and respectful communication; empathic, non-judgemental, professional support; timely access to further testing and appointments; seamless interactions with services and administration; appropriate choices about invasive testing; acknowledgment of the enormity and unexpected nature of the diagnosis, and of the subsequent decision-making challenges; and discussion of the myriad feelings likely to emerge throughout the process.
  
  
  CONCLUSIONS
  This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality.
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Jan
authors.initials: J
authors.lastname: Hodgson
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
authors.forename: Penelope
authors.initials: P
authors.lastname: Pitt
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Sylvia
authors.initials: S
authors.lastname: Metcalfe
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Jane
authors.initials: J
authors.lastname: Halliday
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Monash Ultrasound for Women, Melbourne, Victoria, Australia.
authors.forename: Melody
authors.initials: M
authors.lastname: Menezes
authors.affiliation: Jean Hailes Research Unit, Monash University, Melbourne, Victoria, Australia.
authors.forename: Jane
authors.initials: J
authors.lastname: Fisher
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
authors.forename: Chriselle
authors.initials: C
authors.lastname: Hickerton
authors.affiliation: School of Law, LaTrobe University, Melbourne, Victoria, Australia.
authors.forename: Kerry
authors.initials: K
authors.lastname: Petersen
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Belinda
authors.initials: B
authors.lastname: McClaren
mesh_terms: D000025:Abortion, Eugenic; D000293:Adolescent; D000328:Adult; D001315:Australia; D003142:Communication; D000013:Congenital Abnormalities / Q000175:diagnosis* / Q000523:psychology; D003657:Decision Making; D004645:Empathy; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D062526:Patient Navigation; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology; D036301:Qualitative Research; D055815:Young Adult
keywords: decision-making; fetal abnormality; prenatal diagnosis; qualitative; termination of pregnancy