Summary of the EUROlinkCAT Work package 7 ConnectEpeople
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.
For an introduction to the team Click Here
What is known?
Research projects where patients or parents work together with researchers have been shown to be more likely to be meaningful.
What we are trying to do?
The aim of ConnectEpeople is 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 will work 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 we will develop research questions, with a focus on life, health, illness and education. These questions will be shared with other researchers in EUROlinkCAT for consideration in their ongoing research. Parents will be involved in improving the dissemination of research findings to parents, families, children with the conditions and other key stakeholders using infographics and videos where appropriate.
Who will take 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 have 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 have established our E-Forum.
We have 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.
We have full ethical approval and research governance support from Ulster University, Northern Ireland.
What are we hoping to do in the future?
The long-term outcome anticipated from this work is an E-connected European Parent-led Group that contributes to improving the lives of children with Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring Surgery after the EUROlinkCAT project funding has ended.
We welcome any parents from the participating countries to join our E-Forum
See Our Video Invitation (Click Here)
Or contact us via the EUROlinkCAT Facebook page (Click Here)
Download this Summary
.pdf or in .docx format here.