ABSTRACT
Background: Congenital heart disease (CHD) is one of the major causes of mortality in the pediatric population of both the developing and developed countries. Along with medical and surgical treatment, access to quality care is equally essential in children operated with CHD. This study aims at assessing how the parents perceive quality of life in the child post-operatively and the impact on family.Methods: About 185 parents of children operated for CHD were interviewed using Pediatric Quality of Life Inventory' 3.0 Cardiac, Paediatric Quality of Life Inventory' (PedsQL') Family Impact Module scale and Participation Measure using International Classification of Functioning, Disability and Health-Child Youth by World Health Organization-2007 (ICF-CY) after three months of surgery.Results: CHD was found to be more common among males (57.8%) with commonest surgery being ventricular septal defect (36.8%) followed by tetralogy of fallot and others. Overall 44.8% parents perceived their child had problem following surgery, cognition being the most affected domain. Problems in communication were perceived by 47.6% parents and were worried about the future. Using ICF-CY, 55.1% perceived complains of mild difficulty in mobility and moderate difficulty in self-care and schooling for the child.Conclusions: The overall quality of life of children operated for congenital heart disease was perceived as not affected by parents except for cognitive problems. Parental worry and communication were the most affected domains. As far as schooling and self-care is concerned there was moderate difficulty. There is need for parental counselling and rehabilitation to function for children operated for cardiac surgery post operatively.