"Parent’s knowledge about diagnosis and management of their children with congenital heart diseases in Khartoum, Sudan "

Abstract

Congenital heart disease (CHD) is the most common major congenital anomaly, representing a major global health problem. The incidence is 8 -19 per 1000 birth.1 Congenital heart defects account for one third of babies with significant congenital anomalies diagnosed prenatally or in infancy.2 It has been shown that having an accurate understanding of any chronic condition contributes to improved satisfaction with medical care, less distress, less confusion, better compliance with treatment and an improved emotional state.3 Specifically for children with CHD, parents having a sound knowledge of their child’s condition, treatment and prevention of complications has been shown to promote better health related behaviour in their child by bettering their understanding of the cardiac problem, improving compliance with treatment and avoiding risky behaviour.4 It is fundamental for patient engagement that they be health literate. This is more than just being able to read and understand health information it is about empowering them to exercise their autonomy. Patients with low health literacy have been shown to have poorer health status, are less likely to adhere to the treatment regimen and self-care plans, higher rates of hospital admission, experience more treatment and drug errors, and make less use of preventive services and measures.5 Recently there have been a massive improvement in therapy for congenital heart disease , both surgically and catheter based, despite this improvement several recent studies have shown that understanding of illness by children, adolescents, and adults with congenital heart disease remains far from ideal.4