Peer-to-peer support for congenital heart disease in Europe: ECHDO and ECHG

Abstract

On the national level self-help organisations are very ramant and provide a lot of information. There main task is counselling. But often the counselling within self-help groups is not provided by professional therapists or physicians. In general patients who have been through the same medical procedure before talk to patients who have no experience with it. So the peers can talk on the same communication level. On the national level this works very well, because both parties speak the same language, have the same disease (in our case we speak about congenital heart diseases) and live in the same social and medical system. So they have experiences they can compare with one another. In the last years more and more European self-help organisations have formed European umbrella associations. For CHD we have two such associations. On the one hand the official European organisation called European Congenital Hearts Disease Organisation (ECHDO) and on the other hand the European Congenital Heart Groups (ECHG) which try to become an official association. How can these associations work? They have members from different European countries with a lot of different languages, social systems and health care system. Can they profit from the exchange of information and peer-to-peer counselling?