PARENTS

We need your valuable support once more!

Heartfelt thanks to all parents and children who created the EPICE cohort and participated in the 2 year follow-up. Now we are looking forward to you being part of SHIPS, the follow-up at 5 years of age.

The SHIPS project aims to improve the follow-up care of children born prematurely. To do so, we are studying different follow-up programmes in Europe and their possible impact on the EPICE children and families. To better understand their impact, we want to know about your child’s health and development, and what kind of health care he or she has used.

How do parents and children participate in SHIPS?

Participating in the SHIPS follow-up will include answering a questionnaire and possibly having a health assessment of your child. Exactly how the follow-up will happen depends on your study region, but in general it involves three parts:

1. Accepting the invitation

If you were part of the EPICE cohort, you will be invited to participate in the SHIPS follow-up with your child, by the SHIPS team in your region. If you accept to participate in the follow-up, you will be asked to do the following steps.

2. Answering a questionnaire

All parents who choose to participate in the study will be asked to fill in a questionnaire that takes about 25-35 minutes to complete. In the questionnaire we ask about your child’s health status, quality of life, health service use and overall development. We also ask questions about your own well-being and family situation.

3. Having a health assessment of your child

Some of the children in the cohort – those who are born before 28 weeks of gestation – will be invited to a health assessment. A research clinician will carry out some tests to see how your child develops, and to detect possible difficulties in your child, such as movement difficulties. The tests include games such as naming pictures and drawing lines. In some regions, all children are invited to a health assessment, regardless of gestational age at birth.

You will get more detailed information about the participation with the invitation. You can read more about the tests in a guest article by Dr Samantha Johnson on the EFCNI webpage, or from our SHIPS Factsheet.

Are there any risks in participating?

We will not test any drugs nor therapeutic medications this study, and the participation will not cause any disadvantages or risks for you or your child. It is completely free and voluntary to participate in the study, and you can stop participating at any time.

Parent involvement in creating the study

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.

EFCNI, the European Foundation for the Care of Newborn Infants is the first pan-European organisation and network to represent the interests of preterm and newborn infants and their families. 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 is contributing to the SHIPS 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 gives feedback about SHIPS communication tools, questionnaires and informational materials. We have also asked members of the SHIPS parental advisory board – who are all affected with preterm birth – why they think the SHIPS project is important. Have a view on their perspectives below!

Results and news from the study

It is important that the SHIPS participants 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.

In our news section, you will find information about any events or milestones reached in the project. News about the study and its findings can also be found on the EFCNI website, social media channels, or by signing up to the EFCNI newsletter here.

Researchers from each of the 18 SHIPS countries are currently analysing the results from the EPICE cohort and 2 year follow-up. You will find the results on our Publications page as they are published.

Contact us

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