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

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.

Grantor dc:publisher

Temple University. Libraries

Year dc:date.issued

2022

Author dc:creator

• Gramszlo, Colette

Advisor dc:contributor.advisor

• Jones, Nora L.

• Ethics
• Developmental psychology
• Congenital heart disease
• Health disparities
• Neurodevelopment
• Urban bioethics

Statement dc:rights

• IN COPYRIGHT- This Rights Statement can be used for an Item that is in copyright. Using this statement implies that the organization making this Item available has determined that the Item is in copyright and either is the rights-holder, has obtained permission from the rights-holder(s) to make their Work(s) available, or makes the Item available under an exception or limitation to copyright (including Fair Use) that entitles it to make the Item available.

Licence dc:rights.uri

• http://rightsstatements.org/vocab/InC/1.0/

Language dc:language.iso

eng

Handle dc:identifier.uri

http://hdl.handle.net/20.500.12613/7989

OAI identifier oai:identifier

oai:scholarshare.temple.edu:20.500.12613/7989