School Readiness Among Children With Congenital Heart Disease

Improved survival in infants and children with congenital heart disease (CHD) has led to increasing recognition of neurodevelopmental delays and psychological co-morbidities, due to multifactorial causes, common in this growing population.1 The “neurodevelopmental phenotype” of children with CHD generally includes mild cognitive deficits, attention deficit/hyperactivity, impaired executive functioning, and delays in receptive and expressive communication, fine and gross motor skill, and visual processing; all important indicators of school readiness.2 Children with CHD are at increased risk for mental health disorders including anxiety, depression, and posttraumatic stress.3, 4 These neurodevelopmental delays can evolve over time and have a profound impact on academic and occupational success, as well as the development of adaptive skills needed to transition to adulthood. Studies have reported increased need for special education services among school age children with CHD,5, 6 as well as lower third- and fourth-grade reading and mathematics achievement test scores.6, 7 Adolescents with complex CHD face challenges to school success related to ongoing physical health needs, activity and attendance restrictions, and bullying related to perceived differences from peers.8 Adult survivors of CHD are more likely than adults without CHD to not complete a university degree, high school, or vocational training.9 This underscores the lifelong impact of CHD and its associated effects on neurodevelopmental, functional, and academic outcomes. School readiness, defined by the American Academy of Pediatrics, includes a holistic view of the child's readiness, the school's readiness to receive the child, and the family and community's ability to support the child's development.10 Child-specific components of readiness include the child's physical, social-emotional and executive function, and language development. Readiness of the school means that the school offers an appropriate educational experience to age-eligible children, because a pre-determined set of entry-level skills may not be equitably achievable by all children.10 Adequate school readiness is associated with less grade repetition and higher graduation rates, as well as better adult health outcomes.11 School readiness is also adversely impacted by disparities in socioeconomic status and other social determinants of health, as well as by chronic illness.11, 12 A newer measure of school readiness, Healthy and Ready to Learn National Outcome Measure, was developed through the National Survey of Children's Health. This measure includes parental report of early learning skills, social emotional health, self-regulation, and physical health. Pilot data from this measure indicated that in 2017-2019, 51% of 3- to 5-year-olds were classified as “On Track” for kindergarten entry.13 Other studies have demonstrated that children who have chronic illnesses such as asthma or sickle cell disease, or who were born prematurely are at risk for not being ready to enter kindergarten.14-16 Another component of school readiness is the school's preparedness to serve children with varying needs. Identifying children who require additional support in school due to physical, or psychological health challenges solely from diagnosis-based methods fails to capture all children who need assistance, especially those with complex needs.17 This method also does not acknowledge potentially modifiable factors that contribute to the child's need for assistance, such as social determinants of health. O'Connor et al. proposed a conceptual framework for children with special health care needs (SHCN) that identifies dynamic processes that shape the child with SHCN's school trajectory and identifies opportunities to support the child with SHCN to succeed.17 This model considers the child's readiness to learn, health, family and environmental factors, community factors, and educational system factors as risk and protective factors, and the child with SHCN's functional status as their SHCN influences academic connection and progress.17 This model may be relevant in plans to develop and evaluate school and community interventions to support these vulnerable children. One aspect of school readiness that bears careful consideration is the school's readiness to support and care for a child with CHD in the classroom and while recovering at home, especially a child who has complex physical, psychological, and neurodevelopmental needs. Their physical challenges may include need for medications during school, decreased physical activity tolerance and need for activity accommodations. School nurses need to assess for cardiac-related symptoms such as dyspnea or fatigue as well as potentially life-threatening events such as cardiac arrhythmias. Children with CHD need a careful assessment of their psychological and developmental needs as well, and coordinated efforts with special education, occupational and/or speech therapy, and psychological therapy as indicated. Educational support plans should also include a medical emergency action plan that addresses the student's specific needs. These comprehensive plans should fully encourage participation to the student's peak ability to foster a sense of belonging and reduce ableism. School nurses are integral in developing and implementing these comprehensive plans of care, yet only 60% of US public schools report full time equivalent nurse support.18 Many school nurses support more than 1 public school, further limiting their availability. The global nursing workforce shortage, exacerbated by the COVID-19 pandemic, has only made the need for school nurses more urgent. Furthermore, school educators rely on the expertise of school nurses and the presence of a full-time school nurse can alleviate the knowledge gap related to health care needs of children with CHD or other complex illness.19 Evidence has shown that educators often perceive a lack of preparedness in working with children with chronic illnesses in the classroom, and may underestimate the challenges faced in school by children with chronic illnesses, suggesting a need for more training and support for school professionals working with these populations.19, 20 School-based care coordination is a component of the National Association of School Nurses Framework for 21st Century School Nurse PracticeTM, and is an identified standard of school nursing practice as well as the other components of the nursing process.21 One model of a liaison between medical care providers, school nurses and educators, and the child and family has been implemented in some areas with great success.22 A mixed methods systematic review of school-based care coordination in the US by Francis et al.23 identified positive impacts of care coordination among parents, students, care coordinators, teachers, and improved parent-teacher engagement. Clinical and academic outcomes included improvements in asthma management, immunization adherence, vision and hearing screening follow-up, mental health, and school attendance. Staff shortages, unmet family needs, and restrictive student and health-related privacy laws were identified as barriers to program success. Wider implementation of the care coordination model may provide vital school-based support to improve student health and academic outcomes, but more research is needed on the outcomes of these programs. School nurses are uniquely qualified to lead implementation of nurse-led, school-based health initiatives.23 There are no studies specifically examining school readiness within the context of this growing population of children with CHD. Yet, school readiness is a vital predictor of school success throughout the child's academic lifetime.24 Given the known physical, psychological, and developmental challenges that many survivors of CHD face, it is imperative that school nurses and other health care professionals as well as educators focus attention on school readiness as a key metric to provide longitudinal support to children with CHD. School nurses are the cornerstone of developing, implementing, coordinating, and evaluating a holistic plan of care for children with CHD to promote their academic success and overall health. Initiating a comprehensive, holistic care plan with the first academic experiences of kindergarten will set the child with CHD up for success throughout their academic career. All authors declare no financial or nonfinancial conflicts of interest

Gentry · Library science · Political science · Computer Science · Congenital Heart Disease Studies · Family and Disability Support Research · Infant Development and Preterm Care · Law · Medicine · Gerontology