A Comprehensive Literature Review of the Relationship between Distrust in the United States Health Care System and Organ Donation among African Americans Open Access

Miller, Trish (2017)

Permanent URL: https://etd.library.emory.edu/concern/etds/c247ds983?locale=en



A Comprehensive Literature Review of the Relationship between African American Distrust in the United States Health Care System and Organ Donation
By Trish P. Miller, MBA
African Americans are in need of life saving organ transplantation due to overrepresentation among End Stage Renal Disease (ESRD) patients, however African Americans do not donate organs on par with need. Distrust in the health care system is acknowledged as a significant barrier to African Americans' lack of committment to organ donation. Using the Conceptual Model of Distrust in Health Care, this comprehensive literature review will study the pathways between health care distrust and organ donation among African Americans to better understand how this barrier affects the decision to donate.

Three databases were searched using a keyword search yielding 218 publications. Once duplicates were removed, 43 publications were screened for inclusion. Twenty-four publications were excluded after first stage screening, and an additional five were excluded after second stage screening, resulting in 14 publications for review. Each was categorized into three types of health care distrust based on the Conceptual Model of Health Care Distrust: distrust of health care systems, distrust of medical professionals, and distrust of the organ allocation system, and analyzed to see how they may influence organ donation behaviors among African Americans.
Fourteen publications of empirical studies that focused on the relationship between health care distrust and the decision to donate among African Americans in the United States were reviewed and analyzed. The outcomes focused on cadaveric organ donation intentions, donation attitudes, and/or willingness to donate; with one publication focusing on cadaveric brain donation intentions. Results indicate that with three exceptions, all 14 studies found that the three types of distrust were associated with organ donation behavior. The exceptions are studies that found no association between distrust of the health care system and organ donation: Russell et al. (2012); Robinson et al. (2015), and Jefferson et al. (2011).

The literature suggests a consistent association between distrust in the health care system as a whole and the decision to donate organs among African Americans. Programs and interventions should focus on methods to improve health care trust to improve African Americans' willingness to donate organs to increase the donor pool and improve access to transplants for those in need.

Table of Contents

Table of Contents

Chapter One - Introduction 1
Chronic Kidney Disease in the United States 1
Chronic Kidney Disease and the Treatment of End Stage Renal Disease 1
Need for Organ Donation 2
Organ Donor Need among African Americans 3
Barriers to Organ Donation among African Americans 4
Theoretical framework 6
Research Aims 7
Chapter Two - Literature Review 8
African American Distrust in the United States Health Care System 8
Medical Experimentation on African Americans 10
African American Decisions to Donate Organs 12
Chapter Three - Methods 14
Research Design 14
Target Population 15
Procedures 15
Chapter Four - Results 19
Distrust of the Health Care System 20
Distrust of Medical Professionals 22
Distrust of the Organ Allocation System 23
Chapter Five - Discussion 24
Summary of Study 24
Limitations 25
Implications 25
Recommendations for Future Research and Conclusion 26
References 27
Appendix 32

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