ABSTRACT

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Background: Attention to the quality of life of the children from view of child and their parents to identify a child's specific needs and adopting appropriate and effective care has special importance. This study aimed to determine the quality of life of children with congenital heart disease as perceived by children and their Parents.
Methods: In a descriptive-analytical study, quality of life of 60 school-age children with congenital heart disease hospitalized in Shahid Rajaei Hospital in Tehran by a convenient sampling were examined. Data collection tools included demographic information and quality of life questionnaire for children with heart disease (PedsQl Cardiac Module) from both the children and parents view point. Data were analyzed using SPSS version 16.
Results:  The average score of quality of life from children’s point of view was 0.5 ±0.09, and from their Parents view�point was�0.61± 0.08 (p=00/0). There were significant differences between quality of life scores in all domains (except for disease problems), and totally between both the children and parents point of view ) P >0.05(.               
Conclusion: Our findings indicated that the vision of children with congenital heart disease and�their�parents on dimensions of quality of life were different. Therefore, it is recommended that nurses along with health care, pursue follow up programming for these patients and their family to improve the quality of life of these children, to have an effective step towards empowering children and families for disease control, prevention of complications, anxiety, and thus increasing the level of self-care and quality childs of life of child.

Keywords: congenital heart disease, quality of life, children, parents