Information and Support Needs Survey
Who we are
We are a team of researchers, based at St George’s (University of London) and Poznan University, leading on a European online survey study. The study is part of the wider EUROlinkCAT project investigating the health and educational needs and achievements of children living with congenital anomalies (health conditions present from birth) across Europe in the first 10 years of their lives.
The aim of the survey
A key part of the EUROlinkCAT project is to ensure the voices of parents and carers are heard. The aim of this study is to explore the views of parents and carers regarding the information they have accessed and received about their child’s condition, and their experiences of support. In light of situation we are all currently living in, we are also interested in exploring the views of parents and carers on how the COVID-19 pandemic may have affected their child, their child’s medical care, support, and family life.
We hope this research will help us understand the needs of parents and carers and inform actions that can best support families across Europe. We also hope that the results of the survey will aid in our interpretation of findings from other EUROlinkCAT research studies. At the end of the study, we will prepare a summary of the study results and share this with parents and carers across Europe.
Who can take part in the survey
The survey is for parents and carers of children up to the age of 10 who have one or more of the following health conditions: cleft lip, spina bifida, congenital heart disease, or Down syndrome.
When will the survey be available
We are aiming to launch the survey in late February 2021. The survey will be available in eight languages: English, Polish, Italian, Danish, Dutch, Croatian, Spanish, and German.