Parent involvement

To make the best study possible, it is important to have parents involved, not only as participants, but also in the development of the study.

GFCNI, the Global Foundation for the Care of Newborn Infants (previously called EFCNI, the European Foundation for the Care of Newborn Infants) is the first organisation and network to represent the interests of preterm and newborn infants and their families in Europe. They gather together parents, healthcare experts, policy-makers, scientists, and other stakeholders within the healthcare system with the common goal of improving long-term health of preterm and newborn children by ensuring the best possible prevention, treatment, care and support.

EFCNI contributed to this project by providing a link between researchers and parents. They constituted a parental advisory board involving parent representatives from all over Europe. The parental advisory board gave feedback about communication tools, questionnaires and informational materials. The members of the parental advisory board – who are all affected with preterm birth – provide their perspectives about why they think the SHIPS project is important. Have a view on their perspectives below (click to enlarge)!

GFCNI created factsheets for parents about the projects’ aims and methodology to explain why the results are needed and how they aim to improve the lives of families affected by preterm birth. These can be found on the GFCNI website.

Results from the study

As part of the project, it is important that the participants in the EPICE / SHIPS cohort can access news and results from the study but it is equally important that other parents of preterm babies are informed about the study findings.

More information developed for parents by the GFCNI about the project can be found on the SHIPS section of GFNCI website

Contact us

If you have any questions about the study, you are welcome to contact the coordinating institution.