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Despite the overall improvement in life expectancy of patients living with congenital heart disease (congenital HD), disparities in morbidity and mortality remain throughout the lifespan. Longstanding systemic inequities, disparities in the social determinants of health, and the inability to obtain quality lifelong care contribute to poorer outcomes. To work toward health equity in populations with congenital HD, we must recognize the existence and strategize the elimination of inequities in overall congenital HD morbidity and mortality, disparate health care access, and overall quality of health services in the context of varying social determinants of health, systemic inequities, and structural racism. This requires critically examining multilevel contributions that continue to facilitate health inequities in the natural history and consequences of congenital HD. In this scientific statement, we focus on population, systemic, institutional, and individual-level contributions to health inequities from prenatal to adult congenital HD care. We review opportunities and strategies for improvement in lifelong congenital HD care based on current public health and scientific evidence, surgical data, experiences from other patient populations, and recognition of implicit bias and microaggressions. Furthermore, we review directions and goals for both quantitative and qualitative research approaches to understanding and mitigating health inequities in congenital HD care. Finally, we assess ways to improve the diversity of the congenital HD workforce as well as ethical guidance on addressing social determinants of health in the context of clinical care and research.

BackgroundSurvivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.MethodsA descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.ResultsFourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including "Don't assume": Pervasive ableism; "The elephant in the room": Uncertain future; "Everyone finds something to pick on": Bullying at school; "They know what I have been through": Social support. The overall essence generated from the data was "optimism despite profound uncertainty."ConclusionsAdolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect "optimism despite profound uncertainty."

Theoretical principlesImproved survival of infants and children with congenital heart disease experience has led to recognition that up to half of congenital heart disease survivors also experience developmental delay. Developmentally supportive care is a care model shown in Neonatal Intensive Care Units to be associated with improved outcomes, but developmentally supportive practices with premature infants may not be equally effective in the cardiac population that includes all ages.Phenomena addressedThe purpose of this paper is to present a concept analysis using the Walker and Avant method in order to identify and define characteristics of developmentally supportive care as it may be applied to the population of neonates, infants, and children with congenital heart disease. A theoretical definition of developmentally supportive care is presented.Research linkagesThis concept analysis will provide nurses and allied health professionals with a theoretical basis to implement high quality, family-centered care that meets individual developmental needs in a population at high risk for developmental sequelae. Nursing implications for developmentally supportive care as it applies to infants and children with heart disease are discussed.

ObjectiveDespite overall improvements in congenital heart disease outcomes, racial and ethnic disparities have continued. The purpose of this study is to examine the effect of race and ethnicity, as well as other risk factors on congenital heart surgery length of stay and in-hospital mortality.DesignFrom the 2012 Healthcare Cost and Utilization Project Kids Inpatient Database (KID), we identified 13 130 records with Risk Adjustment in Congenital Heart Surgery complexity score-eligible procedures. Multivariate logistic and linear regression modeling with survey weights, stratification and clustering was used to examine the relationships between predictor variables and length of stay as well as in-hospital mortality.ResultsNo significant mortality differences were found among all race and ethnicity groups across each age group. Black neonates and black infants had a longer length of stay (neonatal estimate = 8.73 days, P = .0034; infant estimate 1.10 days, P = .0253), relative to whites. Government-sponsored insurance was associated with increased odds of neonatal mortality (odds ratio = 1.51, P = .0055), increased length of stay in neonates (estimate = 4.26 days, P = .0009) and infants (estimate = 1.52 days, P = .0181), relative to private insurance. Government-sponsored insurance was associated with increased number of chronic conditions, which were also associated with increased LOS (estimate 8.39 days, P

The article focuses on school readiness among children with congenital heart disease (CHD), highlighting their increased risk for neurodevelopmental delays, mental health disorders, and academic challenges. Topics include the definition of school readiness, disparities in socioeconomic status affecting readiness, and the importance of school nurses in developing comprehensive care plans to support academic success and overall health for children with CHD.