Exploring Discussions and Communication About Organ Donation Among Minority Family Members Público

Abstract

Problem/Background: Organ transplantation for patients with end-stage organ failure is a medical procedure that replaces failing organs with healthier organs. Preceding the technique of organ transplantation, organ failure patients had very few choices for treatment. Voluntary altruistic acts of organ donors are the source for most organs recovered for transplant. Failure in family discussion of death planning has contributed to many lost opportunities at saving lives that can only be achieved by donor or family consent. This lack of discussion among minority family members of potential organ donors has created major barriers regarding organ donation. Consequently, the growing shortage of organs has resulted in 22 people per day dying in the United States while waiting for organ transplants.

Key Aims: The purpose of this study was to use secondary data to explore how individuals develop willingness and attitudes to become organ donors. Secondly, how do these individuals overcome barriers and feel comfortable enough to register for organ donation. Lastly, this study explored the various ways families acquire the willingness to register through healthy conversations that promote organ donation.

Methods: A total of 85 peer reviewed articles with 12 core articles regarding the subject of communication and discussion were included in this systematic literature review. The aim of this study was to explore willingness and attitudes toward communication and discussion between family members regarding organ donation among minority populations.

Conclusion: The connection between attitude, willingness, awareness and knowledge were very important in bringing individuals from stages of negativity toward points of willingness to be organ donors. It also showed how critical educational interventions are to overcoming this critical issue. Revisiting all barriers and creating more interventions and in-depth educational programs is necessary for minority families to understand the effects of behaviors and attitudes toward organ donation.

Table of Contents

Chapter 1 - Introduction 1

Background 1

Link between Family Communication and the Organ Shortage 3

Determinants of Organ Failure in Minority Populations 3

Theoretical Framework - The Organ Donation Model (ODM) 4

Purpose Statement 5

Research Questions 6

Significance Statement 6

Definition of Terms 8

Acronyms 10

Barriers to Organ Donation 11

Lack of Knowledge about Organ Transplant and Donation 12

Misconceptions about the integrity of the body 14

Religion 18

Barriers to Family Donation 19

Lack of Communication Between Family Members 20

Awareness of Organ Donation 21

Donors expressed wish not to donate 21

Factors influencing Family Decisions to Designate for Organ Donation 22

Primary Factors Important to Designation of Organ Donation 23

Families understanding brain death 23

Socioemotional and communication process variables 25

Organ Procurement Organization Request Related Variables 26

Timing of Request 26

Family Discussion 27

Donor Authorization (First Person Consent) 27

Ethics in Organ Donation 30

Organ Donation Education 32

Chapter 3 - Methodology 34

Data Sources 34

Variables 34

Chapter 4 - Results 36

Study Selection 36

Themes and Findings 37

Sociodemographics of Organ Donation 40

Support for Organ Donation 41

Social Influence 46

Attitude and Willingness to Donate 47

Prior Exposure to Organ Donation 49

Education Programs 51

Communication and Discussion Amongst Family / Next of Kin 57

Summary 59

Chapter 5 - Discussion 61

Introduction 61

Key Study Findings 61

Limitations 65

Implications 66

Recommendations 67

Research 67

Education 67

Conclusion 68

Appendix A. First Person Consent and Education by State 70

Appendix B. Family Communication Protocol 71

Appendix C. Population Distribution by State/Ethnicity/Waiting List 72

References 73

LIST OF TABLES Table 1. United States Waiting List for Solid Organs 2

Table 2. Attitudes and Behaviors Toward Organ Donation 38

Table 3. Demographics of Organ Donation 41

Table 4. Desire to Have One's Organs Donated After Death, 2012 42

Table 5. Concern Given to OPO for Families Who Refused Donation 45

Table 6. Trust Among U.S. Non-Designators of Deceased Organ Donation: Overall and by Race/Ethnicity 46

Table 7. Organ Donation, Family Willingness and Discussion 49

Table 8. Overview of Education Studies 54

Table 9. Disclosure Preferences (Personal & Public) 58

Table 10. Overview of African American Consent and Non Consent 59

TABLE OF FIGURES Figure 1. The Organ Donation Model 5

Figure 2. Systematic Review Study Selection 35

About this Master's Thesis

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School	Rollins School of Public Health
Department	Executive Masters of Public Health - MPH
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Psychology, Behavioral Health Sciences, General Health Sciences, Public Health
Palavra-chave	Organ Donation
Committee Chair / Thesis Advisor	Miner, Kathleen R, Emory University
Committee Members	Patzer, Rachel Elizabeth, Emory University Carlson, Lisa M, Emory University

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