Help shape the future of neonatal care

You could help researchers by sharing your experience of your baby being cared for in Neonatal Intensive Care (NICU). 

Researchers are looking for parents or carers to share their views on a new, non-invasive test that could help diagnose infections in newborns faster and help clinicians? choose the right antibiotics more quickly. Your views will help make sure the study is designed in a way that is sensitive, clear and family-friendly. You’ll help shape how the research is explained to families and how permission is asked for.

What experience do I need to help?

You don’t need any special qualifications or scientific knowledge to help with this opportunity. The most important experience is:

• Having had a baby in NICU — whether recently or in the past.
• Being a parent or carer who can share thoughts, feelings and opinions about what it’s like to be in that situation.
• Your lived experience will help the researcher understand how families might feel about a new, non-invasive test for infections in babies. 

What will I be asked to do?

You’ll be invited to join a Microsoft Teams call with other parents or carers who have lived experience of having a baby in NICU. During this session, you’ll be asked to:

• Share your thoughts on the idea of using the new test
• Discuss how acceptable the project is
• Let the researchers know if you have any concerns, such as:
  • How you would feel about this kind of testing
  • Ethical considerations
  • What information you’d want as a parent or carer
• Give feedback on how the research team can make the study more family-friendly and sensitive to parents’ needs.

How long will I be needed for?

• One evening session (one hour) via Microsoft Teams to discuss the acceptability of the proposed diagnostic test.
• Optional ongoing involvement

What are some of the benefits for me?

• Flexible involvement – just one hour to start with, with the option to stay involved
• Sharing your experience to help improve care for babies in hospital
• Help make sure the study is respectful and family-friendly
• Influence how researchers talk to families and ask for consent
• Be part of a group helping guide important research
• Support better tests and treatment for newborn infections

 What support is offered?

• Cover reasonable travel expenses and additional carer or childcare costs 

• Offer payment for time of £25.00 per hour (people can request less if they are in receipt of state benefits)

  Have a look at our guidelines for more information about this. 

If you are receiving any benefits, you can access confidential advice from the Benefits Advice Service for Involvement. 

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