Challenges of inclusive schooling for children and adolescents with congenital heart disease: A phenomenological study

Abstract

Educational attainment is closely associated with health. The objective is to explore the extent to which children and adolescents with congenital heart disease (CHD) are afforded the same educational and socialization opportunities as their healthy peers. We used a qualitative phenomenological design with convenience sampling. Data gathered 27 semistructured interviews: children with CHD (n = 9), parents (n = 10), and professionals (n = 8) in Catalonia, Spain. Interview transcripts were coded using the constant comparative method and analyzed using ATLAS.ti software. The analysis revealed three themes describing the experience of schooling for children with CHD: (1) Empowering and enabling a child with CHD to achieve academically and engage socially is a challenge for parents; (2) Teachers lack the resources and specific skills necessary to meet the diversity needs of children with CHD; (3) Parents and teachers have low expectations regarding the academic achievement of a child with CHD. Further application of the constant comparison method yielded a core theme: (4) Children with CHD experience exclusion from peer group social learning activities. Further efforts are needed for more effective collaboration and coordination between educational and health professionals to provide support for teachers and families and enable children to be better integrated within schools.