Educational challenges and support for children with congenital heart disease

Abstract

BackgroundChildren with congenital heart disease (CHD) often face educational challenges due to medical, social, and school-related factors. Early intervention and support for teachers and students are crucial to improving educational outcomes. This study aimed to identify the challenges experienced by teachers, parents, and children with CHD in school settings and explore strategies to enhance their educational experience.MethodA systematic scoping review examined the educational difficulties faced by children with CHD. This was followed by a qualitative study involving three groups: (i) parents of school-aged children with CHD, (ii) teachers with experience teaching these children, and (iii) children and adolescents (ages 11–17) with varying CHD severity. Semi-structured interviews explored participants’ lived experiences and key challenges.ResultsThe scoping review identified challenges in cognitive, psychomotor, behavioural, and emotional domains, as well as issues with school attendance. Teachers often lacked training on CHD-specific needs, impacting their ability to provide adequate support.Qualitative findings revealed concerns from teachers regarding limited CHD-specific knowledge and the risks of having a child with CHD in their class. Parents expressed worries about their children’s academic performance, social interactions, emotional well-being, and physical health. Strong teacher-parent-child communication was seen as essential in reducing anxiety and fostering a supportive school environment.Children’s experiences varied by CHD severity. Children with Hypoplastic Left Heart Syndrome reported most challenges, including fatigue and executive function difficulties. While some children with Transposition of the Great Arteries experienced concentration difficulties, most reported minimal challenges directly related to their condition. Finally, children with Ventricular Septal Defect reported few educational difficulties.ConclusionTeachers require patient-specific information and resources to support children with CHD, especially those with complex conditions. These findings will inform the development of an online training resource to assist teachers and parents in improving educational experiences for children with CHD.<br/