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In the daily care regarding to children bearing congenital heart disease one can realize that parents have difficulties to deal, at home, with situations coming from the clinical situation itself, such as cyanosis, prevention of the infective endocarditis, administration of medicines, etc. In order to know better the main causes and possible solutions to such situations, one has sought to identify scientifical studies which approach the necessities of information and support to the parents of congenital heart disease from 0 up to 12 years old concerning seven points: congenital heart disease in the very sense of the problem; how to deal with cyanosis; promotion of physical activity; promotion of feeding; promotion of mouth and teeth hygiene; prevention of infective endocarditis and administration of medicines. The search was done in the bases of data MEDLINE, Cochrane, CINAHL, LILACS and Scielo, in the period between 1997 January to 2007 April. Seventeen studies were identified and the tematic analyses of content was used as methodological reference. The categories to analyse were the 7 points previously determinate. The results showed that there are categories with few reaserches carried out, as, for example, the care in situations of cyanosis crisis, promotion of physical activity and administration of medicines. The other ones concentrate the most of the studies. They are: parents’ knowledge about heart disease, promotion of feeding (including breast-feeding), promotion of mouth and teeth hygiene and prevention of infective endocarditis. The general analyses demonstrates that the parents’ knowledge, as a whole, is incomplete and fragmented both in developed world’s countries and in the developing world ones. Cares rendered by nursery, odontological and medical staff are described along other sort of cares. Programs to capacitate parents are few and only one is describeb as succesful. Such results point to the need of changing.concerning the straight relation with parents and concerning the re-organization of the service as well, in order to embrace in a more complete way the necessity of information and support to parents.

Necessidade de informação e suporte aos pais de crianças portadoras de cardiopatias congênitas