Knowledge, attitude and practice of parents’ of children with congenital heart disease in a developing country

Abstract

Background: Congenital heart disease (CHD) is the most common type of birth defects and remain the leading cause of death from congenital malformations. The knowledge of the parents of children with CHD; is important for the long term wellbeing of their children. In 2017 we have conducted study looking at the knowledge of the parents of children with CHD; about the disease, after that study we have implemented some measures to improve the knowledge of the parents and we wanted to see if there was any improvement in the parents knowledge. Objectives: To assess the parent’s knowledge regarding diagnosis and management of their children with CHD. Methods: This is a prospective questionnaire based study, conducted at the Paediatric Cardiology Outpatient clinic Ahmed Gasim cardiac Centre, over a six months period from June to November 2019. Results: The total study population was 120 parents of children with CHD. Of these children, females were 65 (54.2%) and males were 55 (45.8%). The most common age group was 1-5 years old, with 51 (42.5 %) children. 71 (59.2%) of the study population resided in urban areas. 103 (85.8%) of the responders were mothers. 32 (31.0%) mother and 11 (64.7%) fathers were > 40 years old. 9 (52.9%) fathers and 37 (35.9%) mother were primary school graduate. 87 (84.5%) of the mothers were housewives, and10 (58.9%) fathers were unskilled workers. 66 (55%) and 54 (45%) of the parents were of moderate and low social class respectively. 14 (11.7%) children were known to have Down’s syndrome. 60 (50%) had previous cardiac surgery, 26 (21.7%) had previous cardiac catheterizations and 3 (2.5%) had documented episodes of infective endocarditis. The commonest Cardiac diagnoses were Ventricular Septal Defect 49 (40.8%), Atrial Septal defect 23 (19.2%) and Tetralogy of Fallot 18 (15%). 118 (98.3%) were attending the appointment visits regularly. 119 (99.2%) confirmed that the diagnosis of their children heart problem was explained to them. 84 (70%) reiterated their children heart problem correctly. 100 (83.3%) and 113 (94.2%) stated correctly the symptoms and risk factors of Infective Endocarditis (IE) respectively. 44 (36.7%) received information regarding the importance of oral hygiene, 102 (85%) were aware about need for antibiotics before dental procedures and 120 (100%) were aware about measures to maintain a good oral hygiene. The knowledge of parents was considered fair in 49 (40.8%), good in 46 (38.3%) and poor in 25 (20.8%). Conclusion: The knowledge of the parents of children with congenital heart disease was generally good, but there is a room for improvement. Simple measures like providing more information especially written is beneficial. The knowledge of the parents should be assessed and measures should be implemented to improve the knowledge of the parents, empowerment of the parents will improve the wellbeing of children with CHD.