Understanding the Role of Social Norms in Organ Donation Decision Making Among African American Adults Public

Abstract

Background: African Americans (AAs) comprise a disproportionate number of patients waiting on the national transplant list, but are underrepresented among registered organ donors. While barriers to organ donation are well understood, little research explores factors that facilitate interest in donation. Because AAs are oftentimes characterized by strong extended relationships and shared decision making, social norms may be an influential factor in donation intentions and behavior. Utilizing the Theory of Reasoned Action, this study demonstrated the application of theory to better understand the role social norms play in donation decision making, among AAs.

Methods: Self-administered questionnaires were completed by 425 AA adults residing in the metropolitan Atlanta area. Social norms were measured using a Likert scale consisting of two items that addressed the perceptions on levels of favorability of donation and levels of influence a loved one has over the participant's donation decision making. Main outcomes assessed were donation intentions and expression of donation intentions via designation on one's driver's license.

Results: Logistic regression results indicate that a loved one's level of favorability of donation is associated with both donation intentions (OR=2.14, p≤0.01) and expression of donation intentions (OR=1.71, p≤0.01); however findings approached significance with the level of influence a loved one has on donation intentions (OR=1.47, p=0.07) and was not associated with expression of donation intentions (OR=1.07, p>0.05).

Conclusion: Findings suggest that a loved one's level of favorability impacts donation decision making, and conversely, that a loved one's level of influence does not impact donation decision making. Future research should consider exploring these relationships further to understand how social norms can facilitate or inhibit AAs from becoming organ donors. Thus, focusing on social norms and encouraging communication may prove to be useful means of future interventions to improve engagement in donation among AAs.

Table of Contents

Chapter One: Introduction. 1

Organ Transplantation in the United States. 1

Need for Organ Donors. 2

Transplantation Need among Racial and Ethnic Minorities. 3

Transplantation and Donation Rates among AAs. 4

Barriers to Organ Donation among AAs. 5

Increasing Organ Donation Rates among AAs. 6

Theoretical Framework: Theory of Reasoned Action. 7

Research Questions.11

Chapter Two: Literature Review. 13

Factors Influencing Organ Donation Decision Making. 13

Barriers and Facilitators to Organ Donation. 16

Knowledge, attitudes, and awareness. 16

Distrust in the healthcare system. 18

Religious beliefs. 22

Discussion with family members and social norms. 26

Aims of the Current Study. 28

Chapter Three: Methodology. 32

Study Design. 32

Sample and Procedure. 33

Measures. 33

Social norms. 34

Organ donation decision making. 34

Demographics. 35

Data Analysis. 35

Chapter Four: Results. 40

Demographic Characteristics. 40

Demographic Variables with Study Variables. 40

Bivariate Analyses: Social Norms and Organ Donation Decision Making. 41

Multivariate Analysis by Study Aim. 41

Chapter Five: Discussion. 45

Introduction and Summary of Findings. 45

Strengths and Limitations. 50

Implications. 53

Recommendations for Future Research. 54

References. 57

Appendix. 64

Table 1. Demographic Characteristics of Study Participants. 64

Table 2. Donation Decision Making regressed on Social Norms. 65

Table 3. Level of Favorability and Donation Decision Making Moderated by Level of Influence. 66

About this Master's Thesis

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School	Rollins School of Public Health
Department	Behavioral Sciences and Health Education
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Mot-clé	Organ Donation Social Norms
Committee Chair / Thesis Advisor	Jacob Arriola, Kimberly R, Emory University
Committee Members	Perryman, Jennie P, Emory Transplant Center
Partnering Agencies	Emory University schools, faculty or affiliated programs Hospital or other health care provider

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