Grant Proposal for Research Study Addressing Racial Discrimination, Medical Mistrust and Hospice Underutilization Among African Americans Open Access

Cross, Sarah (2016)

Permanent URL: https://etd.library.emory.edu/concern/etds/6t053g05b?locale=en
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Abstract

Meeting the needs of people at the end-of-life is now widely considered a public health concern. More than 2.5 million Americans die annually and life expectancy is on the rise. Our aging population and associated increased healthcare costs also pose significant economic challenges. Hospice is the model for quality compassionate care for those facing a life-limiting illness. Hospice use has been associated with lower rates of hospital and intensive care unit use, reduced hospital deaths, reductions in symptom distress, improved outcomes for caregivers, high patient and family satisfaction, and with reduced Medicare expenditures. African Americans have a disproportionate burden of morbidity and mortality from most of the leading causes of death including cancer, stroke, and heart disease. Unfortunately, the trend of health disparities among African Americans continues into the end of life. Currently, the reasons for these disparities are not well understood. Disparities in the use of hospice are a significant concern for our healthcare system, our economy, and the millions of African Americans who could benefit from hospice, now or in the future. Mistrust of healthcare stemming from historical racial injustices has been suggested as a possible determinant of disparities in hospice utilization among African Americans. Medical mistrust and racial discrimination have been found to negatively impact utilization of health services, but research specific to hospice is lacking. In response to an NIH funding announcement, the thesis proposes a research study analyzing the relationship between self-reported racial discrimination, medical mistrust and hospice use among African Americans.

Table of Contents

Table of Contents

I. Introduction ……………………………………...……….…………………………..................8

End-of-Life Care as a Public Health Issue………………………………………….....……....8

Hospice as Public Health Prevention……………………………………………………............8

Disparities in Hospice Use……………………………………………………………...….............9

Why Hospice Disparities Matter……………………………………………………....…............9

Why Hospice Disparities Exist and What We Still Don't Know………………………..10

Theoretical Framework………………………………………………………......…....…............10

Purpose of the Study……………………………………………………………………..................11

Significance………………………………………………………………………………......................12

Definition of Terms………………………………………………………………………...................12

II. Literature Review……………………………...………………………………...................15 Introduction………………………………………..……………………..………………....................15

Review of Literature………………………………………………..…..………………..................15

Racial Disparities in End-of-Life Care ………………………………………………..…...........15

Determinants of Racial Disparities in End-of-Life Care ……………………………….....17

Racial Discrimination and Health …………………………………………………….….............17

Medical Mistrust and Healthcare Utilization………………………………………………….... 19

Research Priorities ……...………………………………………………....……………................ 21

The Current Problem and Relevance of the Proposed Study…………………….…..…22

Funding Agencies Supporting Similar Research………………………………….…….......23

III. Methods ………………………………………………..………………............................... 25

Description of Grant Announcement……………………………………………………............25

Methodology of the Grant Review Process……………………………………………...........29 Description of Grant Proposal Reviewers………………………………………………...........30 Guidelines for Protection of Human Subjects………………………………………...….......31

IV. Reviewer Comments ………………………………….………………………....................37

Reviewer 1 Comments…………………………………………………………………....................37 Reviewer 2 Comments…………………………………………………………………....................42 Reviewer 3 Comments…………………………………………………………………....................49 Reviewer 4 Comments…………………………………………………………………....................54 Reviewer 5 Comments…………………………………………………………………....................58

V. Grant Proposal …………………………………………………………………........................65

Specific Aims………………………………………………………………………….........…...............65 Research Plan…………………………………………………………………………….......................66 References…………………………………………………………………………….........................72 Appendix A ……………………………………………………………………………........................82

Table 1. Everyday Discrimination Scale……………………………………………...…..........82

Table 2. Medical Mistrust Scale………………………………………………………..................83

Appendix B ……………………………………………………………………………........................84

FOA PA-13-288 - Behavioral and Social Science Research on Understanding and Reducing Health Disparities (R21)……………................................................................................................84

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