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Interview study with parents for

This study focuses on experiences of parents of children with neonatal surgery-related complex care needs at home, nursery, and school. One of our goals is creating a resource for families and professionals on the website

We would like to learn more about experiences of parents of children with complex care needs as the child who has had a neonatal surgery is brought home and then goes to nursery and primary school. Using interviews with parents, we hope to create useful online resources to help parents of such children better understand transitions in their child's life.

This Healthtalk resource will complement the existing Parents' experiences of neonatal surgery resource.

We would like to interview parents, guardians, and carers about their experiences of caring for children, currently aged 4-8, with neonatal surgery-related complex care needs who have had surgery for one of the following conditions:

  • Gastroschisis
  • Hirschsprung's Disease (HD)
  • Congenital Diaphragmatic Hernia (CDH)
  • Oesophageal Atresia/Tracheo-Oesophageal Fistula (OA/TOF)
  • Necrotising Enterocolitis (NEC)
  • Posterior Urethral Valves (PUV).

We would like to conduct video or audio-interviews with parents of children who meet the criteria described above.

Are you interested in taking part?

If you would like to take part, please download and read the Participant Information Sheet – this will tell you everything about the study and what we do with the data we collect.

If you're interested in taking part, please download and complete the Reply Slip and send it to Karolina Kuberska ( She will contact you to explain the process, arrange the interview, and answer any other questions you may have.

You may also contact Karolina Kuberska, the researcher, ( if you'd like a chat before deciding if you'd like to take part.

This study is part of a larger programme, Children's Surgery Outcome Reporting (CSOR) whose Principal Investigator is Prof Marian Knight from the National Perinatal Epidemiology Unit at the University of Oxford. This study is supervised by Dr Lisa Hinton from The Healthcare Improvement Studies Institute at the University of Cambridge.

This work is part of a wider study run by the University of Oxford, (Narratives of health and illness for research, teaching and dissemination via (formerly DIPEx), which has been granted ethical approval by the Berkshire Ethics Committee 12/SC/0495.

Updated: Friday, 23 June 2023 12:54 (v10)