title: The experience of pregnant women with a diagnosis of fetal lower urinary tract obstruction (LUTO).
abstract: OBJECTIVE
  to gain insight into the experiences and perspectives of pregnant women diagnosed antenatally with fetal lower urinary tract obstruction (LUTO) participating in an interventional fetal medicine randomised controlled trial (RCT).
  
  
  METHODS
  a qualitative study using semi-structured interviews. Interviews were analysed using Riessman's narrative analysis.
  
  
  METHODS
  fetal medicine clinics within the United Kingdom National Health Service (NHS).
  
  
  METHODS
  five pregnant women who were recruited as part of an RCT and two additional women who were recruited after the trial was terminated before completion.
  
  
  RESULTS
  three themes were identified and form the basis of this article: the use of technology in pregnancy, the loss of a normal pregnancy, and decision making in uncertainty.
  
  
  CONCLUSIONS
  undertaking qualitative research within an RCT can illuminate the experience of the condition being studied. Women's experience of a pregnancy where LUTO was diagnosed in the fetus entailed an emotional journey following the visualisation of the abnormality through the use of routine ultrasound screening. Women tried to make sense of the diagnosis in order to make the best, albeit less than ideal, decisions for themselves, their baby, and their family. Midwives are in a good position to support women through the emotional distress of diagnosis and to help them negotiate the uncertain terrain in which they make decisions.
authors.affiliation: Centre for Health and Social Care Research, Birmingham City University, Westbourne Rd, Edgbaston, Birmingham B15 3TN, United Kingdom. Electronic address: elaine.denny@bcu.ac.uk.
authors.forename: Elaine
authors.initials: E
authors.lastname: Denny
authors.affiliation: Birmingham Women's Health Care NHS Foundation Trust, Edgbaston, Birmingham B15 2TG, United Kingdom. Electronic address: elizabeth.quinlan-jones@nhs.net.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Quinlan-Jones
authors.affiliation: Centre for Health and Social Care Research, Birmingham City University, Westbourne Rd, Edgbaston, Birmingham B15 3TN, United Kingdom. Electronic address: stavroula.bibila@bcu.ac.uk.
authors.forename: Stavroula
authors.initials: S
authors.lastname: Bibila
authors.affiliation: Centre for Women's & Children's Health, School of Clinical and Experimental Medicine, University of Birmingham, Birmingham B15 2TT, United Kingdom. Electronic address: m.d.kilby@bham.ac.uk.
authors.forename: Mark
authors.initials: M
authors.lastname: Kilby
mesh_terms: D000013:Congenital Abnormalities / Q000175:diagnosis / Q000000981:diagnostic imaging / Q000601:surgery; D003657:Decision Making; D004739:England; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D018579:Patient Selection; D011247:Pregnancy; D037841:Pregnant People / Q000523:psychology*; D011594:Psychometrics; D016216:Ultrasonography, Prenatal; D001748:Urinary Bladder Neck Obstruction / Q000151:congenital* / Q000601:surgery; D014551:Urinary Tract / Q000002:abnormalities* / Q000601:surgery
keywords: Antenatal diagnosis; Decision making; Ultrasound scanning; Women's experiences