What can make things better for parents when babies need abdominal surgery in their first year of life? A qualitative interview study in the UK

Lisa Hinton, Louise Locock, Anna-May Long, Marian Knight

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To understand the experiences of parents of infants who required surgery early in life. To identify messages and training needs for the extended clinical teams caring for these families – including paediatric surgeons, neonatologists, nurses, obstetricians, midwives and sonographers.


United Kingdom wide interview study, including England, Wales and Scotland.


In-depth interviews were conducted with 44 parents who had a baby who underwent early abdominal surgery. Conditions included those diagnosed antenatally (e.g. exomphalos, gastroschisis, congenital diaphragmatic hernia) or which were detected postnatally (e.g. Hirschsprung’s disease, necrotising enterocolitis). Interviews were video and audio recorded and analysed using a modified grounded-theory approach.


While some parents reported experiencing excellent communication and felt they were listened to and involved by the care team, this was not always the case. Dealing with large, complex medical and surgical teams could result in conflicting messages, uncertainty and distress. Parents wanted information but also described being overwhelmed and wanting to distance themselves to maintain hope. Information and support from other parents in hospital and online groups was highly valued. Of particular concern was support when going home and caring for their baby after discharge; an open access policy for readmission offered a helpful safety net.


Listening to the experience of parents provides rich data to enhance clinical understandings on how to improve information and communication with parents, and ameliorate the deep and lasting distress and anxiety that some parents feel when their infants face early surgery. We suggest that the writings of Bourdieu could have resonance in interpreting the experiences of parents as they enter the world of highly-technical neonatal medicine and surgery and the knowledge of the professionals who work in these environments.
Original languageEnglish
Article numbere020921
JournalBMJ Open
Early online date30 Jun 2018
Publication statusPublished - 2018

Bibliographical note

This study was funded through a National Institute for Health Research (NIHR) Professorship award to Marian Knight (NIHR-RP-011-032). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and by the National Institute for Health Research Biomedical Research Centre, Oxford, grant BRC-1215-20008 to the Oxford University Hospitals NHS Foundation Trust and the University of Oxford.


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