“And then there was silence”: Shaping practice through the experience of parents’ emotions

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

Background: Spina Bifida, the most common Neural Tube Defect (NTD) occurring around 28 days following conception, is often discovered in a routine ultrasound examination.
Aim: To articulate and analyse parents’ recollection of the emotions they experienced at the moment they were informed their unborn baby may have neurological disabilities.
Method: Qualitative study, using participatory visual narrative method, to elicit data from parents caring for young children with Spina Bifida.
Results: The emotions that were described, at the point of diagnosis, and the crafted stories parents shared, demonstrated the significance, and the long lasting impact of their experience. The voices we captured call for a change in practice, where healthcare professionals involved in caring for expecting parents transform the way sensitive information about prenatal abnormalities is shared.
Conclusion: Role and care transitions of parents who choose to keep their babies, despite their impending disability, is a lengthy and complex process. Training is needed to ensure professionals offer appropriate support throughout this period, and input from not for profit organisations should be considered at an early stage.
Original languageEnglish
Pages (from-to)569-605
Number of pages10
JournalJournal of Research in Nursing
Issue number8
Publication statusPublished - 27 Dec 2023

Keywords / Materials (for Non-textual outputs)

  • emotional adjustment
  • Prenatal Care
  • parenting
  • prenatal education
  • qualitative research
  • spina bifida


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