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AN URBAN BIOETHICS APPROACH TO UNDERSTANDING DISPARITIES IN NEURODEVELOPMENTAL OUTCOMES FOR CHILDREN WITH CONGENITAL HEART DISEASE
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Thesis/Dissertation
Date
2022
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Urban Bioethics
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DOI
http://dx.doi.org/10.34944/dspace/7961
Abstract
Congenital heart disease (CHD) is the most common birth defect and often resultsin neurodevelopmental impairments and psychological problems which impede
educational and occupational attainment and decrease overall quality of life into
adulthood. While morbidity and mortality outcomes have improved over the last several
decades, non-Hispanic black and Hispanic children continue to experience a
disproportionate burden of CHD. An urban bioethics approach to disparities in cardiac
neurodevelopmental outcomes necessitates an examination of the context, setting, and
structures in which CHD care is delivered. This thesis proposes a model through which
access to and quality of cardiac care impact disparities in neurodevelopmental outcomes.
The thesis describes an initial evaluation of the proposed model conducted through
retrospective record review. Though research funding and hospital resources have
historically flowed toward optimizing surgical and other clinical care techniques, results
indicate that factors such as poverty and other social determinants of health have a greater
impact on many CHD outcomes. An urban bioethics framework asks us to additionally
consider the ways in which cardiac care teams act as barriers to high quality care.
Findings are discussed in terms of next steps and a proposed qualitative study to further
evaluate results.
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