Summary of the EUROlinkCAT Work package 7 ConnectEpeople (closed 31 December 2019 by General Assembly vote)
Who we are
EUROlinkCAT is a project funded by the European Union Horizon 2020 research and innovation programme. It will last for five years (2017-2021) and will bring together different sources of information about the lives of children born with Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring Surgery.
What is known?
Research projects where patients or parents work together with researchers have been shown to be more likely to be meaningful.
What were we trying to do?
The aim of ConnectEpeople was to connect parents across Europe who have children aged 1-11 years with Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring Surgery. Parents worked with us as co-researchers to develop their own research skills and knowledge.
Using secret Facebook groups, private Twitter groups and face-to-face online group discussions with parents developed research questions, with a focus on life, health, illness and education.
Who took part?
Parents who have children aged 1-11 years with Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring Surgery from nine European countries (Croatia, France, Germany, Italy, Netherlands, Poland, Portugal, Spain, and UK) will work together with researchers from Ulster University.
What have we done?
We completed a review of Parent Support Organisations across Europe to identify which online networks are most popular. (To see a summary of the review Click Here)
We established our E-Forum.
We designed an online survey along with parents, professionals and support organizations to find out more about the specific information needs of parents with children who have one of the four conditions. The findings were published in a peer reviewed journal.
We have full ethical approval and research governance support from Ulster University, Northern Ireland.