Where Am I? -> *PARENTS AREA* -> Information and Support Needs Survey
Direct link to this page: http://www.EUROlinkCAT.eu/*parentsarea*/informationandsupportneedssurvey

AboutAbout the survey

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EUROlinkCAT Information and Support Needs Survey

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About the survey

We would like to invite you to take part in this European online survey which aims to explore your thoughts about (1) the information you have received about your child’s health condition and your experiences of support, and (2) how the COVID-19 pandemic may have affected your child, their medical care, support, and your family life.

We hope this research will highlight any areas of unmet needs across Europe and indicate whether there are any lessons to be learnt from particular countries. This information will help us make recommendations about how best to share information with parents and carers, and how to support children and their families more effectively.

We would be very grateful for your participation in the survey if you are a parent or carer (including adoptive and foster parents) of a child up to 10 years of age and who was born with one or more of the following health conditions:

  • Cleft lip (with or without cleft palate)
  • Spina bifida
  • Congenital heart disease that required surgical intervention
  • Down’s syndrome

The survey will take approximately 20 minutes to complete and you will only need to complete it once. The survey will be anonymous, and we will not collect any personally identifiable information about you.

How to take part

The survey is now closed.

If you have any questions about the survey you can contact Dr Elena Marcus (the lead researcher for this study) at emarcus@sgul.ac.uk

Results of the survey

We are currently analysing the survey findings, and will share a summary of our results early in 2022. We will share the results on this website, on our Twitter account (@EUROlinkCAT), and via relevant parent and patient organisations across Europe and in multiple languages.

We will present the results of the survey in more detail (along with other EUROlinkCAT findings) at our EUROlinkCAT Conference in Poznan, Poland, on 7-9 April 2022. We welcome all parents and carers to attend our conference which will be held face-to-face and virtually (for those unable to travel). The conference is free to join.

For more information please visit our conference website: https://bit.ly/3yYfRF0