Resumen

DAMAS, Bruna Gabriela Bibancos; RAMOS, Carolina Aparecida  y  REZENDE, Magda Andrade. Need of information for parents with children suffering from congenital heart defects. Rev. bras. crescimento desenvolv. hum. [online]. 2009, vol.19, n.1, pp.103-113. ISSN 0104-1282.

INTRODUCTION: the nursing staff must inform parents with children suffering from congenital heart defects regarding their needs related to this situation. The most common needs are the seven, as follows: Information related to cardiopathy, promotion of physical activities, adequate diet, care with buccal health, prevention of infectious endocarditis, care during cyanosis crisis and drug administration. OBJECTIVE: to characterize how much information these parents have regarding this disorder. METHOD: systematic mapping on the literature in MEDLINE, Cochrane, CINAHL, LILACS and SciELO databases, from 1997 to 2007, obtaining 17 papers. RESULTS: the following needs, cyanosis crisis, promotion of physical activities and drug administration, were not adequately studied. The majority amongst the 17 papers was concentrated on the remaining four needs. Beside this, parent's knowledge is not satisfactory and is fragmented. It happens either in developed countries as well as in the underdeveloped ones. In general, care is performed by nurses, dental physicians and physicians. Training programs for parents are scarce and only one is described as successful. Changes are mandatory in terms of reorganization of services involving training and support for parents. Besides, validation of programs and protocols of care to promote training and development is required. These programs must be flexible to allow adaptation to clinical situation and to social, cultural and economic determinant factors acting on the family.

Palabras clave : congenital heart defects; child care; paediatric nursing; family.

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