ConnectEpeople: A review of the online support organizations across the EU for parents with children who have Down Syndrome, Spina Bifida, Cleft Lip and severe Heart Disease requiring surgery

Marlene Sinclair, Anna Latos-Bielenska , Julie Mc Cullough, David Elliott

Research output: Contribution to conferencePoster

Abstract

Background: Support organizations for parents who have children with
Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring
Surgery, provide information, advice and social support to members using
a range of methods. One objective of the ConnecEPeople research project
was to identify organizations across Europe and determine the methods of
communication they most commonly use.
Methods: Using the search engine Google, a scoping review was conducted
using a systematic online search from August to October 2017.
Websites were included if they were for parent support organizations,
exclusively for the congenital anomaly of interest and based in any one of
10 European countries involved in the EUROlinkCAT study.
Results: In total 3971 sites were identified and following removal of
irrelevant sites (n¼3296) and 27 duplicates, a sample of 648 remained.
Further review led to the removal of 515 sites as they were not support
organizations. A further 13 were removed as 11 were based outside
Europe, one could not be opened and one was not operational. In total, 120
websites were included. Twenty different methods of communication
were used. Online communication networks were used by 117 organizations, with 100 using email, 96 using Facebook and 66 using
Twitter.
Conclusion: Over 97% of support organizations used online communication.
Facebook was the most popular social network (82%) followed by
Twitter (56%). This data has been used to justify the use of social media to
facilitate a communication platform for ConnectEpeople to connect parents
and researchers in discussions about shared research priorities.
Original languageEnglish
Pages570-571
Number of pages2
Publication statusPublished - 1 Sep 2018
Event4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies - Ispra, Italy
Duration: 14 Jun 201815 Jun 2018

Conference

Conference4th EUROCAT Symposium on Congenital Anomalies: Risk Factors for Congenital Anomalies
CountryItaly
CityIspra
Period14/06/1815/06/18

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