Involving parents in research

We want to make sure the experiences of families are listened to and learnt from.

We actively encourage parents to be involved in research from the early design stages through to the final stages of the project.

By working with parents, ex-neonatal patients and researchers, we want to ensure that research is looking at the things the public feel are important, and that research is carried out in a family-friendly way.

We have created a Parent Involvement Role Description Template for researchers to use when considering involving parents in their work.

“Being involved in neonatal research is a very interesting and rewarding experience. It is important to consult parents with personal experience as it can provide a greater insight”

Ella Selby, a parent involved in the Cooling and Feeding study supported by Bliss.

Our 2018 Survey of Researchers demonstrated the importance and impact of involving parents in research and the value of Bliss' support.

Researchers who involved parents reported making changes to all aspects of their projects in response to parental involvement, and said involving parents had been very helpful, giving the experience an average score of 9 out of 10.

All stated they would involve parents in their research again, and that Bliss' support had been highly valued with an average score of 9.25 out of 10.

9.25 / 10

average score given by researchers rating Bliss' support

9 / 10

average score given by researchers rating how helpful they found parent involvement


researchers said they would involve parents in their research again

I have been fortunate enough to work in partnership with parents in neonatal research for many years, and Bliss have been absolutely crucial in supporting this.

Dr Chris Gale, Consultant Neonatologist at Chelsea and Westminster Foundation Trust and lead researcher on the Cooling and Feeding and NeoEPOCH studies, supported by Bliss.

If you would like to know more about how Bliss helps to recruit parents to be involved in research, see our information on Bliss' approach to research.

If you are a parent who would like to be involved in research, please keep an eye on our social media pages where there are regular posts about research opportunities.

Further guidance on patient and public involvement in research can be found on the INVOLVE website