Objectives 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.
Setting UK-wide interview study, including England, Wales and Scotland.
Participants In-depth interviews were conducted with 44 parents who had a baby who underwent early abdominal surgery. Conditions included those diagnosed antenatally (eg, exomphalos, gastroschisis, congenital diaphragmatic hernia) or those which were detected postnatally (eg, Hirschsprung’s disease, necrotising enterocolitis). Interviews were video and audio recorded and analysed using a modified grounded-theory approach.
Results 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 were 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.
Conclusions 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.
- paediatric gastroenterology
- qualitative research
- pancreatic surgery
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Contributors The study was conceived by MK. All interviews were collected by LH. Analysis was undertaken by LH and LL, with input from MK and A-ML. LH wrote the article, with input from the other authors. The authors thank the members of our parent advisory (PPI) group for their contributions throughout the study.
Funding This study was funded through a National Institute for Health Research (NIHR) Professorship award to MK (NIHR-RP-011-032) and supported by 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.
Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Competing interests None declared.
Patient consent Parents consented to interviews and approved transcripts for analysis and publication.
Ethics approval Berkshire Ethics Committee, 09/H0505/66.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Participants were invited to review their transcript and mark any sections that they did not want used before transferring copyright to the University of Oxford for use in research, teaching, publications and broadcasting. These carefully anonymised transcripts form part of a University of Oxford archive which is available to other bona fide research teams for secondary analysis. All authors had access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
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