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Patient and public involvement (PPI)

In November 2023, we had a PPI group meeting with 5 parents who all have an infant who has taken part in the FEED1 study. Our discussions gathered thoughts on how we can improve trial communicates with parents. In particular, our agenda followed as such:

  • To give an update on the trial and where it's got to
  • To collect views on the current parent newsletter content and how to make this more useful
  • To collect views on how to encourage and support parents to fill in the follow-up survey

We found that: 

  • As a parent you love to hear about what is going on in the trial and the latest updates. This helps you to keep informed about what's going on which will also help parents to remember who we are when you receive your 2-year follow-up questionnaire. SO... we are going to send out our parent newsletters more frequently (now 3 times a year!) and also send out a regular infographic reminder to parents every couple of months which will highlight our key statisitics and thank them for their involvement. We would love for everyone to receive these so if you have only give us your postal address please send us your email too so that you can be added to our mailing list. 
  • There are some barriers to recruitment that we cannot control but we would like to ensure that we are doing our best to help sites consent parents into the study. We were made aware of some reasons why mothers might not want to participate in research so we have worked with our team to create a 'top tips' handout for sites to use to reassure parents about some of the questions or difficulties they might have when thinking about consenting. Positivity is key! 
  • When discussing our follow-up questionnaires we found that the wording we use is really important and it is also really important for our questionnaires to be accessed easily on a mobile phone. We are working with our IT team to try to make this as mobile device friendly as possible, so please bare with us whilst we are doing this, thank you!

We want to make being part of the FEED1 study as best of an experience as we possibly can so any feedback that you have we welcome via email: feed1@nottingham.ac.uk.