The experience of pregnant women with a diagnosis of fetal lower urinary tract obstruction (LUTO)

Research output: Contribution to journalArticlepeer-review


  • Elaine Denny
  • Elizabeth Quinlan-Jones
  • Stavroula Bibila
  • Mark Kilby

Colleges, School and Institutes


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).

DESIGN: a qualitative study using semi-structured interviews. Interviews were analysed using Riessman's narrative analysis.

SETTING: fetal medicine clinics within the United Kingdom National Health Service (NHS).

PARTICIPANTS: 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.

FINDINGS: 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.

IMPLICATIONS AND 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.


Original languageEnglish
Pages (from-to)636-42
Number of pages7
Issue number6
Publication statusPublished - Jun 2014