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Communication networks used by parent support groups: A scoping review

Milestone 24 Due month 12 (31st December 2017)

Across Europe, parents who have children with a congenital anomaly (CA) seek information, advice and social support through attendance and membership of parent support organisations. These organisations use various methods of communication with the most popular being the use of online and social media networks. The main aim of this scoping exercise was to identify support organisations for parents who have children with Down Syndrome, Spina Bifida, Cleft Lip and Severe Heart Disease Requiring Surgery. Ten European countries were included; Croatia, Denmark, France, Germany, Italy (Romagna and Tuscany), the Netherlands, Poland, Portugal, Spain, and the UK. A specific operational objective was to determine the methods used by the organisations to communicate with parents and other networks.

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