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    AN URBAN BIOETHICS APPROACH TO UNDERSTANDING DISPARITIES IN NEURODEVELOPMENTAL OUTCOMES FOR CHILDREN WITH CONGENITAL HEART DISEASE

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    Genre
    Thesis/Dissertation
    Date
    2022
    Author
    Gramszlo, Colette cc
    Advisor
    Jones, Nora L.
    Department
    Urban Bioethics
    Subject
    Ethics
    Developmental psychology
    Congenital heart disease
    Health disparities
    Neurodevelopment
    Urban bioethics
    Permanent link to this record
    http://hdl.handle.net/20.500.12613/7989
    
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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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