Background: Congenital heart disease is one of the common congenital anomaly among the children affecting growth and development of the child and increasing susceptibility of the child to failure to thrive. The objective of the study is to find out the overall health related quality of life of children with congenital heart disease.Methods: A descriptive cross sectional study was carried out among 150 children with congenital heart disease attending in the pediatric out-patient department of Shahid Gangalal National Heart Centre, Bansbari, Kathmandu. The data was collected within the period of 2017/07/16 to 2017/08/16 using purposive sampling technique. Data was collected through interview technique using semi structured questionnaire. Collected data were entered in Statistical Package for Social Science 16 version and analyzed by using descriptive and inferential statistics.Results: The study findings revealed that more than half (52.7%) of the children had satisfactory overall health related quality of life. Health related quality of life is significantly associated with age group of the child (p=0.018), and education of mother (p=0.017)).Conclusions: It can be concluded that more than half of the children tends to have satisfactory overall health related quality of life.Ventricular septal defect is the commonest congenital heart disease. The health related quality of life of children with congenital heart disease tends to be better among those with educated mother and increasing age of the children. Therefore, awareness raising of mothers related to disease condition and care of children with congenital heart disease through mass media or proper intervention program might help to promote the quality of life of children with congenital heart disease. Keywords: Congenital heart disease; health related quality of life.

Introduction: Congenital Heart Disease (CHD) is a problem with structure and function of the heart that is present at birth.  Children with CHD require special care, treatment and follow up for a number of common conditions which may be quite straining to the care givers. The objective of the study was to find out the burden of care among mothers having children with CHD. Methods: This descriptive cross-sectional study was carried out in a cardiac centre of Nepal. A total of 95 mothers having children with CHD attending outpatient department of our institute were selected as the sample for the study using non-probability purposive sampling technique. A semi structured interview questionnaire consisting of the Modified Caregiver Strain Index was used to assess the burden of care among mothers having children with CHD. Frequency and percent were used to describe the variables and chi- square test at 0.05 significance level was used to analyse associations. Results: Most (77.9%) of the mothers were regularly strained to find that their children’s health condition was deteriorating due to CHD. Nearly half (44.2%) of the mothers always had financial constrain while giving care to the child, nearly half (40%) of the mothers had done emotional adjustments to take care of their children with CHD, another two-fifths (28.4%) of the mothers sometimes had disturbed sleep and almost half (46.3%) of the mothers were always upset due to some behaviour of their child with CHD. Half (50.5%) of the mothers had high level of burden of care. Statistically significant association were found between age of the mother and level of burden of care (p value = 0.05). Similarly, the type of family (p value = 0.005), age of the children (p value = 0.000) and type of CHD (p value = 0.002) were significantly associated with the level of burden of care among the mothers. Conclusion: The study concluded that mothers tend to feel less burden of care as the child grows older, mothers having children with cyanotic heart disease tend to experience more burden of care. Mothers of less than thirty years of age and living in a joint family also experience more burden of care.

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