Experiences of schooling in children with long-gap esophageal atresia in Sweden

Abstract Background: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children’s development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden. Method: Twenty-six children with LGEA aged 3-17 were recruited nationwide in Sweden. One parent completed a survey on their child’s school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared to that from 95 children with EA who had primary anastomosis (PA), a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal≥90 percentile. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Significance level was p<0.05. Results: Seventeen children with LGEA (65.4%) had formal school-based support concerning nutritional intake (60%), educational needs (50%) and medical/special health needs (35%), which was significantly more frequent compared to children with PA overall (36.8%, p=0.013) and regarding nutritional intake support in school (20%, p< 0.001). In children with LGEA, school-based support was related to low birth weight (p=0.036), young child age (p=0.014), height ≤-2SD for age/sex (p=0.024) and an increased number of aerodigestive symptoms (p<0.05). All children with LGEA who had abnormal scores of mental health, except for one child, had school-based support. Nine children with LGEA (36%) had school absence ≥1times/month the past year, more frequently because of colds/airway infections (p=0.045) and gastro-intestinal related problems compared to PA (p=0.003). School functioning scores were not significantly different from children with PA (p=0.34) but correlated negatively with school-based support (<0.001) and school absence (p=0.002). One parent out of 26 reported their child’s school satisfaction as “not good”. Conclusions: Children with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Collaborative strategies between specialized health care providers and schools are needed to accommodate for their disease-specific needs in school. Future research focusing on academic achievement in children with EA is needed.