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Parental experiences when a baby needs early surgery

Principal investigators
Lisa Hinton (DIPex University of Oxford), Marian Knight (NPEU)
Jenny Kurinczuk (NPEU), Anna-May Long (NPEU (Former member))
Paediatric surgery
MK NIHR Professorship
Start year
End year
NPEU Contact
Marian Knight


Experiences of parents of infants who require surgery in the first year of life are rarely recorded. Even after discharge from hospital, infants may require multiple outpatient visits to different specialist clinics and the ongoing care requirements can have significant effects on the quality of life of parents and existing children, as well as economic effects through lost work days for parents attending with their infants. This project will address this gap in the evidence through a qualitative study of parents’ experiences, working in partnership with the established Health Experiences Research Group at the University of Oxford. Focussing initially on parents of infants with congenital diaphragmatic hernia, parents will be invited to participate in a qualitative interview to describe their experiences. Between 40 and 50 parents will be purposively sampled. Semi-structured interviews, comprising a narrative element followed by a series of prompts informed by the literature and the input of the advisory group, will be conducted by a single researcher and video or audio recorded for analysis. Analysis will be undertaken by two researchers using the thematic approach based on constant comparison.