After cardiac surgery in the postnatal period parents need to learn about their infant’s congenital heart disease(CHD) and how to manage life after surgery. All information parents need is given in this stressful period and therefore might be difficult to remember and process. In Norway only Oslo University hospital(OUS) performs CHD surgery in the postnatal period and hence has the responsible for initial information to all parents in Norway.
Aims The main intended improvements has been to develop an individualized information system to increase knowledge and coping in parents and secure that all parents receive needed written and oral information before transfer to local health services. A secondary aim has been to improve the communication from OUS to local health services.
Method An interdisciplinary group from OUS children’s department cooperated. After a thoroughly literature review medical knowledge and normalization of daily life was chosen to be highlighted. We individualized the information by dividing it into information categories like; pre- and postoperative considerations(2), different sirculatory consequences(5), medication management(12), nutrition, follow-up, a form to fill in about specific treatment and an uncompleted heart drawing to adapt to the infants diagnosis. A binder was designed to gather information and accompany infants trough coming years of follow-up and to be used in communication between parents and daycare and school. At discharge from OUS information sheets are distributed to local health service.
Results A nationwide and evidence based systematic information system that allows health personnel tindividualize informational needs and cooperate across health services.
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