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Get involved: Interview study for parents of children with complex care needs

Would you like to take part in a study about experiences of children with neonatal surgery related complex care needs at home, nursery, and school? This will be used to develop a new web resource for parents and healthcare professionals.

As part of the ongoing Children’s Surgery Outcome Reporting (CSOR) research project, parents and carers are being invited to take part in an online interview 

The study team are looking for parents, carers, or guardians of children, currently aged between 4 and 8, with neonatal-surgery related complex care needs and who were diagnosed with and had neonatal 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).

How do I take part?

The study involves online interviews where we will ask you about your experiences of caring for your child at home, nursery and school.

What is the goal of the study?

Using interviews with parents, we hope to create useful online Healthtalk resource to help parents of such children better understand transitions in their child’s life. This will complement the existing Parents’ experiences of neonatal surgery resource.

Where can I find out more?

For more details, please see the Participant Information Sheet or go to

You may also contact Karolina Kuberska, a researcher working on the CSOR programme, for an informal chat to help you decide if you’d like to take part.

How do I sign up?

If you’d like to take part, please complete the Reply Slip and email it direct to Karolina and she will get back to you.

This study is part of a wider research programme Children’s Surgery Outcome Reporting (CSOR) run by a team at the University of Oxford and endorsed by TOFS.

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