A Thesis Entitled Factors That Explain and Predict Organ Donation

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A Thesis

entitled

Factors that Explain and Predict Organ Donation Registration: An Application of the

Integrated Behavioral Model

Matthew Robert Jordan

Submitted to the Graduate Faculty as partial fulfillment of the requirements for the

Masters of Science Degree in

Health Outcomes and Socioeconomic Sciences

______Dr. Sharrel L. Pinto, Committee Chair

______Dr. Timothy R. Jordan, Committee Member

______Dr. Cindy S. Puffer, Committee Member

______Dr. Amanda Bryant-Friedrich, Dean College of Graduate Studies

The University of Toledo

August 2017

This document is copyrighted material. Under copyright law, no parts of this document may be reproduced without the expressed permission of the author. An Abstract of

Factors that Explain and Predict Organ Donation Registration: An Application of the Integrated Behavioral Model

Matthew Robert Jordan

Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Masters of Science Degree in Health Outcomes and Socioeconomic Sciences

The University of Toledo

August 2017

Background: Organ transplantation became a new hope for those living with end-stage organ disease. However, the number of patients waiting for this procedure greatly exceeds the number of available donors. This separation leads to the death of almost 30

Americans per day who are waiting for this life changing procedure. Although Americans have shown a high level of support for organ donation, a large gap exists between the support and intention to register. As one of the most trusted and accessible healthcare professionals, pharmacist may have an opportunity to provide expanded services and education to the public and patients about organ donation. This study looks to understand what motivates registration as an organ donor and identify perceptions of the public about pharmacist-driven education on the process. Methods: This is a cross-sectional, survey- based, exploratory study. A survey instrument was designed and validated. Following pilot testing, the survey was released electronically using Amazon Mechanical Turk.

Participants were linked to the survey who are U.S. citizens/permanent residents over the age of eighteen. The 88-item, 10-section survey is based on the Integrated Behavioral

Model (IBM) and examines attitudes, perceived norms, and perceived control associated

with becoming an organ donor. Three questions also examine their perceptions of pharmacists’ role in educating the public about organ donation and whether they feel others would be receptive to this education at the pharmacy. Additional questions examine the impact of media messages, religion, and other common misconceptions of organ donation on the intent to register. A link to Donate Life America is also available electronically to participants who indicate interest in obtaining more information.

Results: A total of 523 usable responses were collected out of 551 (95% completion) with 184 (35%) identified as not being registered donors. Non-donors were significantly more likely to hold negative attitudes and less awareness of those around them being registered, when compared to non-donors. Attitudes were found to be the most significant predictor of both past behavior (OR: 1.154, CI: 1.097-1.214, p < 0.001) and future intention (OR: 1.108, CI: 1.018-1.206, p = 0.023), when compared against registered donors. Being of lower financial status and of the Asian American race/ethnicity were associated with poorer intention to register as an organ donor. Attitude was significantly correlated with intention (r = 0.362. p < 0.05), as well as perceived norms (r = 0.204, p <

0.05), positive perceived behavioral control (r = 0.451, p < 0.05), and self-efficacy (r =

0.204, p < 0.05). Regardless of registration status, respondents did not believe that educating the public on organ donation registration was not an appropriate role for a pharmacist (n = 267, 51.1%) or that people would be receptive to the question about organ donation by the pharmacist during a routine pharmacy visit (n = 302, 57.7%).

This thesis is dedicated to

My parents – Mark and Renee Jordan

To my younger brothers – David and Andrew Jordan

And to anyone who proudly owns the title of a Brother of Kappa Psi Pharmaceutical

Fraternity, Inc.

Acknowledgements

First, I want to acknowledge my major adviser and guide through this process, Dr.

Sharrel Pinto. You have been both a mentor and a second mother, working tirelessly to provide us with a strong education and great experiences. Thank you for everything you have done and your constant love and support, because this project would not be possible without you.

Dr. Timothy Jordan, thank you for taking part in this committee and your dedication to its success. Your dedication to your students is unmatched, and without you, this survey would not have been as strong as it is now. Thank you for all you have done, and putting up with my constant questions about health behavior theory. I have learned so much from you, and I hope to apply much of it to my future career and research.

Dr. Cindy Puffer, thank you for being one of the most supportive and positive people I know. It has been an absolute pleasure getting to know you more over the course of becoming a part of my committee, and your help bringing pharmacists into organ donation education has been invaluable.

Joseph and Judith Conda, you are the most generous people I have known. Your financial support of the Health Outcomes and Socioeconomic Sciences (HOSS) program at the University of Toledo has given me many opportunities to advance pharmacy practice and research in ways that I never thought possible. Thank you from the bottom

of my heart, and I hope to one day emulate your generosity to the College of Pharmacy and Pharmaceutical Sciences.

Jessica Kruger (Sloan), your assistance with Qualtrics and getting the survey prepared and launched was an enormous help to me. I would have probably struggled for hours doing what you did within minutes. I know you have been working hard with your dissertation and other commitments you had as well, but I sincerely appreciate your time and efforts in helping me. You were a great mentor and guide along the way with Dr.

Jordan, and I wish you the best as you move on into your career.

I would like to acknowledge the following individuals for their support towards strengthening the project and making it what it is today: Josh Spayde, Mark Wagner,

John Fairchild, Sara Sawicki, Hanna McLaughlin, Paul Knecht, and Alyssa Pennington.

Finally, I would like to recognize my colleagues and peers for their support and guidance through this process over the years: Feyikemi Osundina, Janvi Sah, Angela

Simon, Kelsey Dorka, Rebekah Panak, Andrew Brinkerhoff, Alexandra Born, Tessa

Hastings (Conner), Dr. Kevin Omerza, Dr. Diane Cappelletty, Dr. Michael Rees, Dr.

Jorge Ortiz, and Dr. Kelly Buschor.

Table of Contents

Abstract ...... iii

Acknowledgements ...... 1

Table of Contents ...... 3

List of Tables ...... 6

List of Figures ...... 8

List of Abbreviations ...... 9

1 Introduction………...... 11

1.1 Advancement in Solid Organ Transplant ...... 11

1.2 Becoming a Transplant Candidate ...... 13

1.3 Health in the U.S...... 14

1.4 Barriers to Donation...... 15

1.5 Pharmacists as Educators ...... 17

1.6 Need for Research...... 18

1.7 Significance...... 19

1.8 Research Goal...... 19

1.9 Research Objectives...... 20

1.10 Research Questions...... 20

2 Review of the Literature ...... 22

2.1 Discussing Organ Donation and Procedures...... 22

2.2 Enhancing the Transplant Procedure...... 24

2.3 The U.S. Health Status...... 25

2.4 Understanding Barriers to Organ Donation...... 27

2.4.1 Communication...... 28

2.4.2 Preconceptions of the Healthcare System...... 32

2.4.3 Cultural Beliefs ...... 36

2.4.4 Finances/Ethics ...... 39

2.5 Theoretical Framework...... 43

3 Methodology…...... 48

3.1 Study Design ...... 48

3.2 Theoretical Framework ...... 49

3.3 Eligibility Criteria ...... 51

3.4 Survey Development & Testing...... 52

3.5 Data Collection ...... 58

3.6 Data Entry and Scoring ...... 59

3.7 Data Analysis ...... 61

4 Results…...... 62

4.1 Validity, Reliability, and Readability ...... 62

4.2 Completion Rate ...... 70

4.3 Respondent Characteristics ...... 71

4.4 Item Responses: Donors and Non-Donors ...... 74

4.5 Item Responses: Non-Donors ...... 82

4.6 Relationship Between Direct/Indirect Items, Construct Scores ...... 91

4.7 Factors that Predict Registration (Past and Future) ...... 92 4

5 Discussion…...... 98

5.1 Validity, Reliability, and Readability ...... 98

5.2 Completion Rate ...... 99

5.3 Demographic Characteristics ...... 99

5.4 Applying the Integrated Behavioral Model ...... 102

5.4.1 Social Support and Awareness...... 103

5.4.2 Exposure to Positive Factors...... 104

5.4.3 Awareness of Registration Process ...... 106

5.4.4 Positive Attitudes and Intention ...... 108

5.5 Recommendations for Individuals/Groups ...... 111

5.6 Limitations of the Study...... 112

5.7 Suggestions for Future Research ...... 114

References ...... 116

A Data and Results from Elicitation Interviews ...... 124

B Amazon Mechanical Turk Participant Requirements Email ...... 136

C Face and Content Validity Experts ...... 138

D Survey Instrument ...... 139

E Institutional Review Board Approval and Informed Consent ...... 153

F Free Text Responses for Organ Donation Educators ...... 155

List of Tables

4.1 Test-Retest Correlation Coefficients...... 64

4.2 KMO & Bartlett’s Test ...... 65

4.3 Eigenvalue Comparisons ...... 66

4.4 Principle Component Analysis Results ...... 67

4.5 Cronbach’s Alpha ...... 70

4.6 Survey Completion Rate ...... 71

4.7 Demographics ...... 72

4.8 Donor/Non-Donor Comparisons: Experiential Attitudes ...... 74

4.9 Donor/Non-Donor Comparisons: Subjective/Descriptive Norms ...... 75

4.10 Media Message Exposures ...... 78

4.11 Organ Donation Educator Rankings ...... 79

4.12 Perceptions of the Pharmacist as an Organ Donation Registration Educator ...... 80

4.13 Religiosity ...... 81

4.14 PAPM: Non-Donors...... 82

4.15 Non-Donors: Experiential Attitudes (Direct) Responses ...... 83

4.16 Non-Donors: Instrumental Attitudes (Indirect) & Evaluation Responses ...... 84

4.17 Non-Donors: Evaluation Beliefs & Motivation to Comply Responses ...... 85

4.18 Non-Donors: Subjective & Descriptive Norm Responses ...... 86

4.19 Non-Donors: Self-Efficacy Direct & Indirect Responses ...... 87

4.20 Non-Donors: Perceived Behavioral Control Responses ...... 88

4.21 Non-Donors: Misc. Responses on Organ Donation Beliefs ...... 90

4.22 Direct/Indirect Items & Correlations ...... 91

4.23 Spearman’s Correlation ...... 92

4.24 Binomial Logistic Regression: Set-Up ...... 93

4.25 Binomial Logistic Regression: Future Behavioral Intention ...... 94

4.26 Binomial Logistic Regression: Set-Up with Direct Items ...... 96

4.27 Binomial Logistic Regression: Direct Items ...... 96

4.28 Binomial Logistic Regression: Utilizing Demographics ...... 97

A.1 Elicitation Interview: Responses...... 130

A.2 Elicitation Interview: Demographics ...... 133

A.3 Demographic Keys...... 134

A.4 Free Responses Obtained from Elicitation Interviews...... 135

F.1 Free Text Responses from Educator Question...... 155

List of Figures

2.1 Barriers to Organ Donation ...... 28

2.2 Integrated Behavioral Model (IBM) ...... 43

2.3 Modified Integrated Behavioral Model ...... 44

2.4 Operational Definitions ...... 45

2.5 Precaution Adaption Process Model (PAPM) ...... 47

3.1 Theoretical Framework: Modified Integrated Behavioral Model ...... 50

3.2 Modified PAPM ...... 51

4.1 Fry Reliability Graph Readout for Instrument ...... 63

4.2 Scree Plot from Principle Component Analysis ...... 66

List of Abbreviations and/or Definitions

CIT ...... Cold Ischemia Time: the reference frame of time that starts when an organ is removed from a body (donor) and chilled to preserve its functionality until it is surgically inserted into the person receiving the organ.

Donor ...... An individual who willingly, through self or next of kin, allows either a part of or a full organ be removed from their body to be given to a compatible individual who is in need of a new organ. A donor is classified by most transplant programs as either: living- related (LRD), living-unrelated (LUD), or deceased donor.

Hemodialysis...... Is a process created through medical advancements that helps to replace/substitute the essential functions of waste management and filtration of the blood in patients who no longer have functioning kidneys.

HLA ...... The Human Leukotriene Antigen is a type of cell marker that is utilized by transplant centers to determine how genetically similar a donor organ is to its potential recipient. This helps determine the risk level of the transplant and furthermore the degree of immune system suppressing medications required to protect the new organ from being attacked and destroyed by the recipient’s immune system.

Non-Donor ...... For the purpose of this study, a non-donor is one who is identified as meeting one of the following: a) has not registered as an active organ donor on their driver’s license or other official government document/database or b) has clear, documented objections to organ donation after death.

NOTA ...... National Organ Transplant Act of 1984. This act outlawed the sale of human organs and led to the establishment of the Organ Procurement and Transplantation Network.

OPO...... Organ Procurement Organization: An organization under UNOS (see bottom) that is responsible for the evaluation and retrieval of organs from deceased donors. With consent and passing tests, the deceased organ information is sent to UNOS to match with a potential recipient and then securely sent to the matched location. 9

OPTN ...... Organ Procurement and Transplantation Network: This federally supported mandate from NOTA (see above) is an interlinked web that connects organ donors and donations to those who need an organ for transplant.

Recipient ...... This is an individual who ‘receives’ a partial or full organ from an organ donor, which is then transplanted into the body.

SSI ...... Surgical site infection(s): These are infections that occur at the site of the organ transplant, typically due to organisms that are normally on the skin that become infectious outside of their normal habitat (the skin).

UNOS ...... United Network for Organ Sharing: This is a non-profit organization that manages the OPTN contract, appointed by the federal government. UNOS is the only network manager in the United States, and oversees all organ matching functions and updates full medical records of donors and recipients.

Chapter 1

Introduction

This chapter introduces the topic of organ donation in the United States and related issues that pertain to the US health care system. It will discuss the success and growth of the transplant field as it relates to medical advancements, as well as the shortage of organ donors. In addition, this chapter will look at the current status of chronic diseases in the U.S. that increase the risk for organ failure. Medical terminology and abbreviations are defined in the List of Abbreviations and/or Definitions section, found prior to this chapter.

1.1 Advancement of Solid Organ Transplant

Organ transplantation has come a long way since its beginning in the early twentieth century. Prior to this point in time, the only prognosis for organ failure was patient death.1 With the new discovery of vascular anastomoses (the surgical joining of two previously non-connected blood vessels), the idea of organ transplant arose.1 Several first attempts involved using pig or goat kidneys, or organs from bodies that had passed on over three weeks prior to the organ removal.1 Much of the medical advancements in sterile technique and cold ischemia time (CIT), were not well-defined by the medical

profession. It was not until 1954 where the first successful kidney transplant occurred between two identical twin brothers, one being the organ donor and one being the organ recipient.2,3 The organ functioned in the recipient for a total of eight years.

Following this successful procedure, research continued to help the field develop to transplant kidneys, hearts, livers, lungs, intestines, and pancreases.2 Organs were traditionally received from the deceased who granted permission to use their organs after death for another individual. Today, a portion of some organs (liver, lungs, pancreas) or a full organ out of a set (one single lung, one single kidney) can be donated from a living human and successfully given to another individual.1,2,4,5

With the advancement of solid organ transplants, it became clear that death was not the only option for patients experiencing organ failure. Advancements in immunosuppressive therapy, surgical techniques, and other medical evolvements have created an environment where a person could actively seek out the aid of an institution for a potential transplant.1,6-10 However, barriers have arisen in the practice of transplantation which make it difficult for patients to receive a new organ.11 The most important barrier being insufficient numbers of available organs to meet the current demand.

Trends in organ donation and transplants between 1998 and 2008 have shown a significant increase in the number of patients awaiting transplants.11 Despite the immense need for organs, both from living and deceased donors, the list of patients who need organs grows approximately five-times faster than the donor list.12

1.2 Becoming a Transplant Candidate & Recipient

Organ transplantation is a highly monitored and regulated field by the U.S.

Government. In 1986, the U.S. passed the National Organ Transplant Act (NOTA)13 to regulate the legal and ethical processes of managing waiting lists and matching donors to recipients. In addition, the act also prohibited the sale of organs.2 NOTA led to the establishment of the Organ Procurement and Transplantation Network (OPTN), which involved the collective policies and procedures for organ donation and receiving.14

Management of these policies, matching individuals, and guiding transplant institutions was awarded to a non-profit organization; The United Network for Organ Sharing

(UNOS).14 UNOS is the only manager of the OPTN contract, and through its 58 member hospitals, links the donor, recipient, and institution together.4,14

A candidate who meets the organ failure criteria for a transplant is referred to their nearest OPTN-approved transplant facility for review and work-up. Appropriate testing and documentation are done and sent to UNOS. Once the patient has been cleared, the patient will be placed on a waiting list for an organ that is compatible with their body and size.14 The length of this wait is difficult to assess. For instance, patients are prioritized based on the emergent situation, or how quickly they need an organ to survive

(based on when one becomes available). In addition, the current location of the patient and the potential matching organ, as well as what organ it is, plays a critical role.4,14,15

Organs such as the heart and lungs have a very short survival time outside of the body.

Failing to get the organ to the patient in that time frame will render the organ itself unusable and hazardous for the patient, thus wasting the organ.16

Recipients are ranked on a national waiting list for whichever organ is needed to be replaced. Multiple factors are used to determine a candidate’s placement, including urgency, body size, blood type, and many others.17 Each organ has its own set of criteria.15 According to UNOS, once an appropriate match is identified for a specific potential recipient, a transplant center is notified to rapidly admit the patient, perform any required testing and monitoring, and prepare for surgery. Since each organ has a specific cold ischemic time, it is important to be ready at all times for both the patient and the transplant center.4,14,15 This can be a challenge for the patient, especially if the distance to the transplant center from their home is very far.

1.3 Health in the U.S.

In general, the health of the U.S. population has been below average in various categories when compared against other developed nations, despite the enormous investment by the country into healthcare.18 Although the country has made large strides by improving life expectancy from birth and decreasing all-cause death rates, the U.S. faces a newly growing epidemic of chronic illnesses. Today, chronic diseases hold the highest burden on the health care system, accounting for 7 out of 10 deaths per year.19

Some of the top chronic illness in the United States include: 1) Cardiovascular disease, 2)

Arthritis, 3) Diabetes, 4) Asthma, 5) Cancer, and 6) Chronic obstructive pulmonary disorder (COPD).18,20 Together, these diseases affect over 100 million Americans, with this number continuing to increase.18,19

The above mentioned conditions, except for arthritis and asthma, can lead to end- stage organ disease if poorly managed. Chronic diseases and other genetic traits/diseases that lead to organ failure are the primary reasons why a person is placed on the official waiting list for an organ every 10 minutes.21 This high demand and an insufficient number of donors have led to a situation in which 17 to 22 people die per day while waiting.12,22 This issue has been referred to as us being the ‘victims of our own success.’23

Almost 75% or more of patients receiving a transplant survive to see another five years following the new organ (this is not the case for lung transplant recipients, where the number is only slightly greater than 55%).22 Surviving more years with an improved quality of life is a beacon of hope for those who are waiting for a transplant. However, if the amount of donors continues to remain level, there are many who may not get the opportunity to experience that second chance.21,23

1.4 Barriers to Donation

Living donors are highly encouraged and favored for transplants. The odds of survival for the recipient of an organ are much greater from living versus deceased donors.4,16 Out of 30,974 patients who received a transplant in 2015, only 5,989 (5.17%) of those were performed from a living donor, usually a relative or friend of the patient.12,22

There have been barriers identified that make people unwilling to become a registered organ donor, living or deceased. One of the first barriers encountered is

specific for living donors, who must go through extensive evaluations by the institution to prevent any harm from coming to them or the recipient of their organ, as well as long- term follow up.24 The donor must be well-informed of all potential risks that can occur, and also be deemed able to continue to thrive following the removal of the organ or segment of the organ.4 Some groups have expressed fears of this process, worrying about significantly decreased lifespans, or the loss of wages/insurance and the ability to support one’s family.25

Another barrier faced in organ donation is the lack of communication between the potential donor and their family. Organ Procurement and Transplantation Network policy mandates that medical personnel speak to the family of brain-dead patients about organ donation.5,14 Although this mandate was enacted in the 1980’s, it was not until the early

1990’s that a second law was enacted, stating that if a patient was ruled as brain-dead, and had previously expressed wishes for organ donation by signing a donor card, that card would be honored in the event of any family opposition.5 For those who did not possess a card or express their wishes to their loved ones, the choice remained with the listed next of kin.

When a person’s wishes regarding organ donation are not clearly communicated during life, it can lead to disagreements among family members and the next of kin, especially when the patient is in a persistent vegetative state or when brain dead.

Willingness to allow deceased organ donation depends on whether the family was aware of their deceased member’s wishes, as well as the timing of the request in relation to the death.26 Open communication among family members is critical as is the need for individuals to express their medical care wishes via the use of advanced directives. 16

Providing appropriate education to the family and to the community in general helps patients and families to make informed decisions.26,27

Another barrier to donation includes mistrust of the healthcare system, especially from minority populations.28 Myths and misconceptions of organ donation have shown to be a deterrent from fit donors, because they do not trust what would happen to their organ following its removal.29 Another well-established belief that some patients have is that physicians and hospitals do not put in the same effort to save the lives of donors as they do non-donors, since they want the donor to die and harvest the organs for a transplant.28,29 Without proper social support and patient education, cognitive barriers such as beliefs and perceptions may continue to limit the number of potentially viable donors and transplant procedures.

1.5 Pharmacist as Educators

Pharmacists have continued to expand their practice abilities beyond the traditional dispensing roles into a variety of services, including educating the public on chronic diseases.30 As one of the most trusted and accessible health care professionals, pharmacists may be in a position to provide additional education on registering as an organ donor.31 Since they are essential, required members of any transplant team, pharmacists may have the education and accessibility to provide education to the public.32,33 Current efforts from the Transplant Pharmacy Community of Practice (under the American Society of Transplantation) have pushed to challenge pharmacists and

pharmacy students to reach out to the public to provide education about registering, but only a few number of schools and locations have joined the movement.34-36

1.6 Need for Research

There is a clear need for organ donation and an increased registration or organ donors. There are not enough organs available to meet the demands of all the patients experiencing organ failure. Due to an increase in both chronic diseases that can result in organ failure, as well as an increase in medical technology and procedures, organ transplants have become a highly-sought option to help save the lives of these patients.

A national survey done by the U.S. Department of Health and Human Services in

2012 found that 95% of 3,369 adult responders indicated their support for organ donation. However, only 60% had registered as a donor through a state registry or driver’s license.37 The reasons for this disconnect remains unclear within the current literature. One of the ways to uncover and delineate these reasons is more research.

Although past research has identified multiple barriers to organ donation registration,16,28,38-41 very few studies have identified factors that explain or predict people’s motivation to register as an organ donor. Moreover, even fewer studies have been done to identify practical solutions to the organ shortage problem. Considering the many barriers, there is no single best way to approach the problem.

Understanding how someone makes the decision of becoming a registered donor may identify why a disconnect exists between the support and overall behavior. Various behavioral theories such as the Theory of Planned Behavior (TPB) or the Theory of

Reasoned Action (TRA) have been previously used to study such behaviors.19,42 The

Integrated Behavioral Model (IBM) is another theory that builds off of both TRA and

TPB constructs, as well as other health theories.43 The IBM has been used to explain and predict health behaviors, such as emergency contraception use.44 It has also been used for advanced care planning, a topic similar to that of organ donation.45 For these reasons, the researchers believed that this theory would be an appropriate theoretical framework for the study.

1.7 Significance

This study looks to add quantitative evidence to the literature regarding the thought process of individuals as they process the decision to become an organ donor. By better understanding the thought process of organ donation in the U.S., the United

Network for Organ Sharing, and pro-organ donation organizations may better reach and direct non-donors towards the benefits of organ donation by appealing to individualized needs. Assisting to increase the number of donors may help to provide additional organs in the future for those in need of transplants and provide additional areas of future research. This is also the first known study to explore perceptions of pharmacist involvement in organ donation education.

1.8 Research Goal

The goal of this study is to identify factors that explain and predict registration as an organ donor using the Integrated Behavioral Model (IBM). 19

1.9 Research Objectives

1. To identify the differences between donors and non-donors in attitudes and

perceived norms.

2. To identify the relationships between attitudes, perceived norms, and personal

agency with the intention to register as an organ donor.

3. To determine which constructs of the IBM are most predictive of past

registration to as an organ donor among those who have already done so.

4. To determine which constructs of the IBM are most predictive of behavioral

intention to register as an organ donor, among those who have yet to do so.

5. To determine if race/ethnicity, highest education level, and annual household

income are significant predictors of past organ donation registration and

future behavioral intentions

6. To explore the perceptions of organ donation education provided by

pharmacists.

1.10 Research Questions

1. Are there differences in attitudes and/or perceived norms between donors

and non-donors?

2. Is there a relationship between attitudes, perceived norms, or personal

agency and intention to register?

3. For those who already registered, which IBM construct(s) is/are the most

predictive of the past behavior of registering as an organ donor? 20

4. For those who have not registered, which IBM construct(s) is/are the most

predictive of the past behavior of registering as an organ donor?

5. Are race/ethnicity, highest education level completed, or annual household

income significant predictors of past organ donation registration and/or

future behavioral intention?

6. What is the general perception towards pharmacists providing education

on organ donation registration?

Chapter 2

Review of the Literature

This chapter examines multiple topics presented in Chapter 1 and provides a thorough review of the literature available to further expand on these topics. These areas of interest include: the enhancement of the transplant procedure (from start to finish), the changing status of health within the United States, the literature’s identified barriers to the act of becoming an organ donor, and the chosen theoretical framework for this study.

2.1 Discussing Organ Donation and Procedures

The process of organ donation and transplant is complex. It has been refined over the years to maximize the benefits to those in need while keeping the system fair and ethical. Understanding the need for research comes from better understanding this process.

An individual who meets criteria for organ failure has two options for continuing their life and care. First, they may elect to continue with the treatment they are using.

Most of this involves drug therapy, or a mechanical method of performing a failing organ’s function, such as hemodialysis.46,47 Processes such as hemodialysis are effective,

but they compound a significant cost to the healthcare system in addition to producing an overall poor quality of life for the patient using it.48 The second option is to determine if they qualify to become a transplant candidate.

Patients may become transplant candidates through an evaluation process. Once referred and the ideal transplant center for the patient is selected, they will meet with a multidisciplinary team for tests and reviews.49 A transplant procedure is complicated, and patients may not be able to survive the stress and demands that are required to undergo the procedure. The tests performed by the transplant center examine all possibilities to ensure that the patient is viable candidate. Once approved, the patient is registered onto the national list and awaits a time for a matching, available organ to become available.14

An organ becomes available through the process of donation. There are two major types of donors: living and deceased.4 Living donors are donors who willingly elect to donate a portion of their working organs to another without compromising their own life and functionality.4 Currently, a single kidney is the most common living donation available.50 Each healthy individual is born with two kidneys; one of which can be donated without compromising the function of the organ itself. It is also possible for two lobes of the liver to be given as a live donation. The liver in both the donor and the recipient will regrow until the liver is close to its original size.50 Living donors are also able to donate a portion or lobe of their lung without compromising functionality of their own breathing.50 This study will be focusing on the aspect of deceased donation and the likelihood of registering as a deceased organ donor.

For deceased donors, the act of donation occurs at the time of brain death. Brain death is medically defined as a point in time where the brain has irreversible damage and 23

can no longer carry out life-fulfilling processes without medical and/or mechanical assistance.51 Unlike a coma, which can be reversed after a period of time, brain death is irreversible and cannot be undone and renders the patient clinically and legally dead.52,53

These two terms have often been mistaken by patients and families.

Deceased donation is often carried through by family members or the next of kin.

Although each state has its own organ donor registry, many organ procurement organizations are required to still receive consent from the next of kin to proceed with the donation.51,54,55 Without consent, there is no organ donation regardless of the wishes of the deceased donor.

2.2 Enhancing the Transplant Procedure

With advancements in modern medicine and technology, performing transplants has become increasingly successful.8,10 Part of this is due to the advancement in medications that allow for a depletion or reduction in the body’s normal immune response during the operation and throughout the life of the patient.56,57 These are essential in preventing the organ from rejecting, which is the body’s recognition of the organ as a foreign object, and prompting an immune response against the organ.1

Rejection is often minimized through matching people by means of their expression of the human leukotriene antigen (HLA), which can tell providers how closely matched two organs are genetically, and how likely it is that the body’s immune system would recognize it as foreign and attempt to destroy it.7,9

Due to the level of immunosuppression required for successful organ survival, transplant patients are often greatly at risk for opportunistic infections and cancers.1

These are often managed by medications to help prevent the infection for a duration of time, and frequent screenings/monitoring by the providers taking care of the transplanted patient.58-61 These patients can be challenging to manage, but dedicated multidisciplinary teams have been formed to assist in managing the patient from all perspectives of care.17

2.3 The U.S. Health Status

The United States has delivered less than optimal care to its citizens, spending much more than other developed nations and receiving less in return for health outcomes.62 Studies have shown connections between the suboptimal level of care and socioeconomic status that combine to create multiple levels of healthcare disparities.15,28,29,52,63-69 These disparities separate Americans further in healthcare through ethnicity, geographical, religious, and other cultural backgrounds. Minorities are often left with poorer healthcare as compared to Caucasians.22,62 Disparities have been the focus of many healthcare goals and reforms in the United States, including the Patient

Protection and Affordable Care Act, and the Healthy People initiative, among others.19,70

Healthcare disparities have a significant impact on the overall health of the U.S. A study performed by Murray et al noted that there was a 35-year age gap difference between the average life expectancies of the longest and shortest lived racial/ethnic groups in the United States, respectively.65 Their study was aimed at defining Americans into 8 subgroups (referred to as the 8 Americas), and examining links to disparities across 25

the groups, which contained millions to tens of millions of Americans.65 Part of their findings showed that healthcare disparities were more linked towards young and middle- aged males and females, and resulted from chronic disease conditions and injuries that have well-established risk factors.65 What this helps to uncover is that chronic diseases have a stronger relation to disparities in this country over race, income, or access and utilization.65

Chronic diseases are defined by the World Health Organization as diseases that are not passed from person to person; typically, with slow progression and long duration for the patient.58 The impact of chronic diseases on U.S. health is significant. Healthy

People 2020 reports that chronic diseases are the leading cause of death and disability in the United States, responsible for 7 in 10 deaths per year. In total, 1 in 2 adults over the age of 18 are living with a chronic disease, most commonly: cardiovascular disease, diabetes, asthma/COPD, or cancer.19

With new medical advancements in the United States, chronic diseases have continued to remain a problem. Over the last 50 years, the death rate from heart disease dropped by two-thirds. This is countered by the rate that people are getting the disease, which has not altered at all.20 Part of this is accounted for by the social determinants of health.71 The social determinants of health point to more than just individual choices for health and looks to both the social and physical environment that an individual was raised in and also surrounds themselves with. The environment and various factors within have favored certain choices that negatively impact an individual’s health status, such as: lack of exercise/physical activity, poor nutrition, tobacco use, and excessive alcohol use.72

Reports from the Centers for Disease Control and Prevention (CDC) indicate that over 26

half of Americans do not meet the daily recommendations for physical activity, three quarters do not meet the same recommendations for muscle strengthening, and approximately 47% of Americans live with major risk factors for advanced cardiovascular disease.72 Some of these risk factors include uncontrolled blood pressure,

LDL-cholesterol, or currently smoke.72 Ninety percent of Americans use too much salt in their diets, which is one of the largest contributors to high blood pressure in the future.72

These social determinants of health which play a factor in lifestyle and health choices help drive chronic diseases in the United States, and financially, this amounts to nearly $1 trillion in healthcare spending and may increase to $6 trillion by 2050.20

With more people developing chronic diseases and living longer, the result of this for life, the organ has failed. Chronic diseases are considered the most common cause of organ failure, and the most common reason an organ transplant is required 73. If diseases such as diabetes, hypertension, COPD, and coronary heart disease continue their current trends in the United States, patients will still run risks of organ failure. Subsequently, a transplant will be discussed as an available option instead of death. This has resulted in the prior statement of a name being added to the transplant list every ten minutes.

2.4 Understanding Barriers to Organ Donation

The following section will briefly examine barriers experienced towards organ donation. Studies exist on the examination of the barriers of organ donation, and many barriers can be simplified into 4 major categories: communication,26,38,39,74-76 preconceptions of the healthcare system,29,38,40,41,74,77 cultural beliefs,25,27,29,52,63,64,66-68,78,79

and financial and ethical considerations.25,52,80 Each of these major categories was defined over the course of performing the literature review, and will be explained in further detail. A visual display of these barriers can be seen in Figure 2.1.

Barriers to Donation

Communication Cultural Beliefs

Preconceptions of Finances/Ethics Healthcare System

Figure 2.1: Visual representation of the author’s designed summary of the barriers to organ donation as determined from the scientific

literature.

2.4.1 Communication

Communication is one of the fundamental elements of human connection.

Without it, there is no relationship that can be built. The same can be said for the relationship between donors, whether living or deceased, and those who inquire about organ donation.

At the time of death, anyone can be an organ donor. The only factor that stops this is if a documented objection was made during the person’s lifetime.11 Where this can become a problem is whether this information is known. Death is a very difficult subject

for many people to discuss. For some, discussions of death is considered taboo and subjected to the belief that discussions on the matter may “jinx” a person into experiencing that situation themselves.26

Experiencing a traumatic hospitalization is a difficult burden on all members of the patient’s immediate family. Impairment and hospitalization is a difficult to watch in a loved one, especially when care is being provided by unfamiliar faces. A sensation resembling a loss of control and loss of a loved one can be crippling, and having to make important decisions in regards to their care becomes a near impossible task.74 It is at this stage where families will be asked about consenting for organ donation. The barrier encountered by the request is a two-sided problem regarding communication.

A study done by Siminoff, et al performed a study looking at nine trauma hospitals in southwestern Pennsylvania and northeastern Ohio. Families of deceased patients were interviewed on their responses towards the request for their loved one to become a (deceased) organ donor. There were 741 cases reviewed of potential organ donors, in which 596 (80.4%) were questioned about the potentials of organ donation.

Only 47.5% of these (~283 deceased patients) had their families consent to the process.81

What occurred during this process that caused a response rate of less than half?

Communication accounted for most the disapproval, coming from both the family’s and provider’s sides. Over half of the families (55%) made their decision at the time of the request. There was a favorable response by 57.6% of these families, 25.5% unfavorable and 16.9% undecided. Patients who died due to trauma were more likely to have families consent for donation over non-trauma causes of death (p = 0.002). Families who fell into the donation category had several communication points that significantly impacted their 29

willingness to allow a donation. These factors included: knowing the family member had an organ donor card, having an explicit discussion with them about organ donation, and a belief that the patient would want this (regardless of the presence of an organ donor card)

(p < 0.05).81

From the provider standpoint, the same study also looked at the response rates from the families regarding experiences from the healthcare providers. Siminoff et al noted that socioemotional issues and communication to the families were very important and greatly affected response rates. A family who felt harassed and/or surprised about the organ donation request was significantly less likely to donate (65.9% versus 34.1% and

66.0% versus 34.0%, respectively; p < 0.01). Secondly, families who believed that 1 or more healthcare professionals involved in the care of their loved one were less likely to consent to organ donation (56.6% versus 43.4%, p = 0.04). When controlling for other variables, the authors found that families who spoke to a provider other than the physician, and those who had two-thirds more contact with a representative who procured the organs for transplants, were three times more likely to consent for donation (AOR,

2.96;m 95% CI: 2.58-3.40).81

The study performed by Siminoff et al showed the significance of communication between all parties involved in the deceased donor transplant. With this information regarding families and their discussions about donation, the question should not be limited to the setting of death or critical condition to begin communication. Ignorance of the family member’s wishes regarding organ donation has been shown to be a major communication block, and remains a true finding in more recent international literature publications.16,40,77 30

A study performed by Brown et al showed similar results to Siminoff et al while examining 827 potential organ donor cases in the South and Central Texas regions.

Findings showed that initial requests that were conducted independently of the organ procurement team had a significantly less response rate (15% versus 8%, p = 0.001).

Within the study, Brown et al showed that families of older patients were less likely to donate. Families who knew their departed loved one’s wishes regarding organ donation were nearly seven times as likely to consent for organ donation.38,82

How do we overcome this barrier? A study performed in Spain by Frutos et al recommended that organ donation interview should be seen as a process that starts from the moment that the family of the patient arrives at the hospital for care.83 This can pose an advantage towards easing the grieving families into a more comfortable position to communicate on-site, but it does not reach the communication that is not occurring prior to this event. A 2005 poll on transplant indicated that only 53% of Americans had a family member communicate their wishes regarding donation.39 Despite this, only 40% of all potential organ donors have become active donors.84

Morgan and Miller performed a survey study of 798 adult employees on their opinions of organ donation. A total of 319 (40% of all respondents) indicated that they were registered organ donors. From this amount, 276 (86.5%) also indicated their wishes with their immediate family. Out of the individuals who did not wish to be donor, only

29% indicated their current wishes to their respective families. Three hypotheses were proposed during the study: 1) knowledge of organ donation will impact a respondents’ willingness to discuss organ donation, 2) there will be a direct relation between a positive attitude of organ donation and willingness to communicate about organ donation, and 3) 31

the willingness to communicate about organ donation with the family will be positively associated with the individual’s level of altruism. From the responses gathered, each hypothesis was supported (p < 0.001).26

2.4.2 Preconceptions of the Healthcare System

Communication between individuals has shown to be an influential barrier when it comes to organ donation. A second barrier is the perceived notation of the healthcare system. This barrier can simply be explained by the level of trust/beliefs of how the healthcare system manages organ donors and those in need for a transplant. Multiple studies have shown that this is quite a wide, complex topic for people and is full of misconceptions.

Two studies performed by Morgan et al examine perceptions of organ donation and connected it to potential influence from the media. Their first study examined opinions of organ donation, and where these opinions were formed. Morgan et al used the theory of social representation, which states that individuals gathering information on an unknown phenomenon will utilize mass media as their first step in formulating a public opinion on said phenomenon.85 Social representation was then combined with the idea of framing, which has been used multiple times in the literature to portray many social and political issues. Using the media to identify frames of belief is critical, since prior literature has shown that the media (television) can have a very powerful impact on one’s rationale for decision making on healthcare topics.75

The first study led by Morgan used a subscription to a program called

‘ShadowTV.’ Its use provided clips and closed-captioned transcriptions of all shows that referenced organ donation on the following broadcasting stations: ABC, NBC, CBS,

FOX, CNN, C-SPAN, and MSNBC. Shows and programs were limited to two (2) calendar years and focused only on entertainment television.76

After reviewing the uncovered media, the authors found two meta-frames, or overarching frames that covered all the themes or frames within the media. The first, which will be explained with full detail, is the moral corruption of the powerful. This overarching theme consisted of secondary and tertiary frames or themes. Without question, the largest secondary frame identified was corruption in the medical system.

Morgan et al further defined this through tertiary frames, which included a variety of views on doctors and physicians. On multiple occasions, doctors were portrayed as

‘vultures’ who were eager for patients to die to procure their organs, or portrayed as corrupt manipulators that decide themselves who gets an organ and who does not.

Additional frames have included depicting the healthcare system as one which forces doctors to declare death prematurely, thus allowing organs to be procured earlier without continuing to expend energy into saving the donor’s life. Finally, they have also shown the medical system as corrupt by allowing black markets for organs to arise. Black market concepts are often displayed by showing buyers and sellers that are willing to go as far as murdering people to get organs for transplant.76

Negative viewpoints depicted in media do not simply stop there. Instead, they continue onto other secondary frames. Two additional viewpoints include depicting some of the recipients of a donated organ in a very negative light. One such light has portrayed 33

recipients as ‘bad’ people. Depending on the episode or story viewed, the recipient can be depicted as undeserving or ungrateful, typically having pasts filled with alcoholism, being a prisoner, an abuser, and other socially unacceptable behavior(s). Secondary portrayals have included recipients as being wealthy or rich, indicating that a better financial status can easily purchase a new life; or the life of another individual who possesses an organ you seek.76

Finally, there is a negative viewpoint of donors. Donors are often portrayed as the sole source of spare parts. When this frame was used in mass media, it has given rise to

(tertiary) frames underneath it, depicting donors as those who are poorly treated following their deaths while their organs are harvested. Even families and recipients are portrayed coldly as individuals who are hoping and counting on the death of an individual to become the source of their spare body part.76

Morgan et al traced some of this negativity across all different types of shows on the networks listed prior. Some of the more obvious shows are those of medical and legal nature, including: ER, General Hospital, Law & Order, House, and Grey’s Anatomy.

There were also accounts on popular, daytime television shows, notably: All My

Children, and One Life to Live. To the surprise of some, organ donation and transplant were even depicted on shows of a cartoon or comic nature, which included: Seinfeld,

Family Guy, The Simpsons, and The Drew Carrey Show.76

Despite the negativity, there were several accounts of positives of organ donation.

In several episodes (noted in: Seinfeld, The Drew Carrey Show, and a movie called Gang

Related), organ donors were portrayed as “good people.” In Gang Related, the authors noted a scene where an officer of the law questioned a woman regarding a crime. This 34

woman is depicted as a “tough” stripper, and is belittled by the officer for her lifestyle and appearance. He is taken by surprise when he examines her identification and finds that she is a registered organ donor, later stating that she “actually has a heart of gold.”

Similar accounts were observed in the above mentioned shows, depicting unknown strangers in positive lights and later discovering their good was traced back to being organ donors.76

This information becomes critical when applied to Morgan and others’ second study. A total of 80 family-paired groups were gathered from two separate locations: rural northeastern-central Pennsylvania and an urban area of southern Charlotte, North

Carolina. Both areas had comparable consent rates for organ donation (50% PA; 52%

NC). Families consented to be recorded and sat and in a comfortable living room-like area to discuss vacation plans and other non-controversial topics. Once the families felt comfortable, they were instructed to pick up a set of index cards and discuss their answers to the questions. All questions started off small, asking about their organ donation status and why they chose this. Latter questions became more thought provoking regarding organ donation and family views. Results of the discussions amongst the family units uncovered that negative opinions on organ donation were almost always justified through sources of fiction or dramatization from various media outlets.41 Although the sample size was a small makeup of the overall United States population, its foundation supports that mass media and fictionalized work plays a role within the public fear of organ donation.

Preconceptions of the healthcare system are not solely limited to views obtained from the media. Knowledge of the system and how it works has been a repeated issue 35

time and time again. Healthcare providers are aware of the need that rapidly extracting an organ from a brain-dead donor can have on someone waiting for a transplant.77 Families of brain dead patients typically do not have the same level of knowledge, and assuming otherwise has been found to defer patients from accepting the request.26,86

The next section of the literature review will discuss the barriers of cultural beliefs and how they have been found to relate to the organ donation request process.

2.4.3 Cultural Beliefs

Cultural beliefs, for this study, encompasses religious, racial, and ethnic beliefs held by an individual. The literature has reviewed multiple levels of cultural disparities within the field of medicine; organ donation/transplant is no different.

One of the largest disparities in organ donation/transplant regards African

Americans. A 2000 study by Siminoff, et al reported that African Americans made up

30% of the U.S. population having end-stage renal disease (ESRD), and 35.6% of the total Americans waiting on the transplant waiting list.29 More recent studies have shown that this number has either remained the same or increased, depending on the time reference being examined.15,52 A study later performed by Siminoff, Lawrence, and

Arnold in 2003 worked to explain the differences in perceptions between African and

Caucasian Americans’ experiences and perceptions regarding organ donation requests.

This study was previously used to describe the impact of communication between all parties involved in the organ donation process (see Section 2.4.1). This study was a separate publication focusing on the cultural disparities. 36

Out of the 415 patients retrospectively identified for their study, approximately

15% were African American (n = 61, 14.7%). When comparing the families’ knowledge of donation wishes, Caucasian were more likely to believe their loved one wanted to donate their organs versus African Americans (59.4% versus 39.3%; p = 0.004). African

American families were more likely to have no prior knowledge of their departed one’s wishes as compared to Caucasian families (72.9% versus 49.0%, p < 0.0001). Caucasian families were reported to have more likely considered the wishes of their loved one over

African American families (84.3% versus 69.4%, p = 0.017).69

What can explain these differences? Some instances have found that the overall lack of knowledge regarding organ donation and the need has deferred African

Americans from registering as donors. Previous studies have indicated this is more the case over a reluctance to give, since African Americans have tended to be more willing to give to charities as compared to other races.87,88

Other notable explanations come from a general distrust from the healthcare system. Much of this can relate back to the U.S.’s long-standing history with racial discrimination in the past during the times of slavery. Additional conflicts with race/culture and healthcare stem back to well-noted events, such as the Tuskegee syphilis experiments; whose effects are still felt to present day.89 Between the lack of knowledge, distrust of the healthcare system, perceived religious beliefs, and desires for donated organs to be given preference towards African American recipients,28 there is difficulty in gaining African American responses for registration.

Increased donations among African Americans have occurred, but not at the rate that is needed. A study performed by Locke et al examined willingness to donate through 37

the nominal group technique. Their study identified that 66.7% of respondents felt that either education or knowledge were essential to increase the likelihood of registration as an organ donor.90 By increasing education/knowledge, especially in a religious environment through clergy and other religious supporters, there may be improved rates for organ donation among African Americans.64,80,90

African Americans are not the only culture that has faced barriers to organ donation. A study performed by Alden and Cheung examined a total of ten hypotheses regarding Asian American resistance to organ donation. Two thousand questionnaires were sent out to urban-area households in the western United States. In total, there were

752 returned questionnaires, forming a response rate of 37.6%. The authors performed a linear regression on the data observed, comparing it to the responses of European

Americans and controlling for age and knowledge of the organ donation process. As the regression was conducted, the authors determined that the maintenance of body integrity and the trust of the healthcare professionals were the most significant predictors of donation registration status. This may explain a prior low donation rate by Asian

Americans observed in the past. However, a surprising finding showed that cultural influences did not predict their organ donation status. Although an interesting find, the limitations of the finding and data, being of a smaller sample and geographic region, makes the data hard to extrapolate across the culture itself.63

Hispanic Americans are also susceptible to cultural barriers identified within the literature. This population is greatly affected by the incidence of renal failure, which has a direct relationship to the need for an organ transplant.79 Despite this, what has hindered this group from becoming donors? A focus group study performed by Siegel et al found 38

that the key component linking many of the barriers faced by the Hispanic population was knowledge.67 Targeted, educational interventions were found to have assisted in helping some overcome this barrier, as reported in a study by Salim et al.91

Each of the following studies above helped to illustrate the different barriers related to race/ethnicity/and cultural beliefs experienced within the United States that poses some level of hindrance on the act of registering to become a donor, living or deceased.

2.4.4 Finances/Ethics

Finances and ethics often go hand in hand with each other when it comes to transplants and organ donation. Many times, the argument arises for payment or compensation to be given to (living) organ donors, but is this practice ethical? This section aims to look at both pieces and review some of the available literature summarizing this information.

Dr. Mark Siegler argues in favor of the donation process, especially for those of living donors. From his viewpoint, living donors should be the preferred, go-to people for certain procedures, primarily for those waiting for kidney transplants.23 With the transplantation of kidneys being the most successful procedure, performed in a wide variety of countries and settings (with no legal restrictions on the act of voluntarily giving a working kidney), he believes it is clear that the procedure is ethical. Since living donors provide the best outcomes for the recipient in renal transplantation, and with the high number of need compared to the limitless ‘abundance’ of available donors, the choice for

who should donate is clear. In fact, living kidney donors have begun taking part in paired donation programs. These programs will, when a living donor does not match their intended recipient, will find another living donor-recipient pair that also did not match; but the two donors end up matching for the other recipient. Doing this allows for a matched, living donor for a recipient that matches, and both donors donate their kidney for the cause of the other patient in the match.48

What about the financial side of it? There have been debates regarding the act of financially compensating living (and sometimes deceased) donors. Deceased donors typically do not incur costs, but for a living donor, these may be substantial. In a UNOS published document for living donors, information provided explains that the recipient’s insurance tends to cover the costs of the evaluation and follow-up visit(s) for the donor.

However, they may or may not be covered, depending on the insurance. What may not be covered includes: 1) costs of travel and lodging for the procedure, 2) annual physicals, 3) lost income from work, 4) health problems identified from the donor evaluation, or 5) other non-medical expenses.4 Some of these may not even be covered by the donor’s insurance, and has been reported as a fact that can hurt a donor’s chances at getting covered in the future through their insurance. This is a significant concern for many donors (especially living), considering that the costs and lost time from work can be substantial, and recoveries are generally not rapid.4,55

Per NOTA, organs cannot be bought or sold in the United States.14 This law, in combination with the above-mentioned insurance information, has been cited as part of the reason why we have the current shortage. A phenomenon known as transplant tourism, where Americans have left the country to other areas of the world to receive 40

transplants, arose from this law; although it was the very thing Congress aimed to prevent with it.92 Citizens are highly discouraged from traveling overseas to purchase and participate in transplant procedures, since some areas have minimal governance protecting the patients. Procedures have been found to be poor, unstandardized, and provide significant risks of infections, mortality, and overall poor graft survival.92,93 With the current state of the waiting list, it is clear why some patients may elect to go this route. They could die while waiting, or they could at least earn a fighting chance with an organ obtained overseas; but with great risk to themselves.

Several organizational groups have petitioned the suspension of NOTA, believing that it may be the answer to increasing the supply of available organs.86 Delmonico et al. believe otherwise. In their opinion article published in 2015, the authors looked at multiple viewpoints of the financial rewards to either living or deceased donors for their act. Offering money for either act, at an ethical consideration, can be considered and exploitation of a weakness; namely a financial disadvantage that someone is experiencing. The authors noted examples of this in other countries, such as Egypt, India, the Phillipenes, etc., where higher poverty levels created a larger population available for exploitation. A high corruption index within the gap between the rich and the poor greatly increased the likelihood of such events (the exploiting of the weak and vulnerable) would occur.94 Instead, the authors believed that the focus of the U.S. should be to remove the disincentives to organ donation, or the barriers that exist.

Gaston et al. aimed at developing a proposal towards increasing the number of available donors for kidney transplants. One solution that was possible, but not probable, was increasing the strictness of the criteria for listing someone as a transplant candidate. 41

If the same number of people were placed on waiting as were transplanted, thus decreasing the demand, the supply should match. However, the authors discarded this since it would cause a major ethical conflict.95 Instead, they proposed a package of benefits that would “leave the donor as well off” as they were before the procedure, both monetarily and physically. With capping the package at a financial value far below the market’s “accepted” value, this would provide what the authors believed would be a feasible solution, at a value of approximately $3300 per donor.95 It is still questionable as to whether the act is truly feasible or not, but the authors did conclude that their goal would be to spark some debate amongst their peers regarding the act and seeing whether something like this could actually work for supporting living donors.

With the discussion of finances and the ethical considerations, it becomes appropriate to ask: why do people give? Aaker and Akutsu examine this question by considering the role of an individual’s identity. Using the Identity-Based Model (IBM), it has been found that how someone views themselves (their identity) impacts the drive that someone should give. This is broken down into the degree of change that the identity has, the individuals readiness to act, and how the identity itself makes sense of the world around the person all influences whether or not they give, and how much they will give.96

Regarding organ donation, this may indicate that a person’s identity within the process of becoming a donor, or their future role as a donor (either living or deceased), may play a role in whether they follow through with the act of registering as a donor.

2.5 Theoretical Framework

The theoretical framework chosen for this study is the Integrated Behavioral

Model (IBM). The IBM a theory was created from the merging of several theories, such

as the Theory of Reasoned Action, Theory of Planned Behavior, and Social Cognitive

Theory.43 Based on the expansion and improvements from its predecessor theories,43 and

its use for predicting various health behaviors (including end-of-life planning),44,45 it was

believed that the IBM would be an appropriate theory for this study. The original IBM

can be seen in Figure 2.2. Knowledge or Skill to Perform a Behavior Attitude Feelings about Behavior Experiential Attitude Salience of Behavior O Behavioral Beliefs Instrumental Attitude T H E Normative Beliefs – Perceived Norm Intention to R Others' Expectations F Injunctive Norm Perform a Behavior Behavior A Normative Beliefs – Descriptive Norm C Other’s Behavior T O Personal Agency R Control Beliefs Environmental Perceived Control S Constraints Efficacy Beliefs Self-Efficacy

Figure 2.2: The Integrated Behavioral Model (IBM) Habit of Behavior

The IBM has three major constructs that directly affect intention to perform a

behavior, including attitudes, perceived norms, and personal agency.43 Each of these

factors can be linked back to a component reviewed in the barriers to organ donation

discussed previously in detail. Based on the ethical principles, cultural beliefs, and

preconceptions of the healthcare system, a person may choose to have either a positive or

negative attitude towards registering to become an organ donor. Depending on the level

of communication with family and friends, a person will hold a perceived norm or belief

regarding registering to be an organ donor based on the beliefs and opinions of those

closest to them. Personal agency involves self-efficacy towards registering, or a self-

evaluation as to whether someone is certain they can register as an organ donor. This self-

evaluation is an important concept in behavioral psychology. 97 Perceived control is the

exposure to various experiences that may make it easier or harder to perform a task, like

registering to become an organ donor.

Figure 2.3 displays a modified version of the IBM used for this study, and Figure

2.4 displays operational definitions for the constructs of the study.

Attitudes towards Registering Experiential Attitude

Instrumental Attitude

Perceived Norms towards Registering

Demographics Injunctive Norm Intention to Age, Sex, Race/Ethnicity, Descriptive Norm Register in Next Highest Education Level, Twelve Months

Annual Household Income Perceived Control towards Registering as an Organ Donor

Figure 2.3: A modified version of Self-Efficacy of Registering as an Organ the Integrated Donor Behavioral Model (IBM) used in this study 44

1. Attitudes Towards Registering as an Organ Donor – Refers to what the responder thinks or feels regarding the act of registering as an organ donor. This value is indirectly measured through: a. Experiential Attitude – Positive or negative feelings that one associates with registering to become an organ donor. b. Instrumental Attitude – The value attached towards the positive or negative feelings associated with registering to become a donor 2. Perceived Norms towards Registering as an Organ Donation – Whether most people have registered as an organ donor. This is indirectly measured through: a. Injunctive Norms – Whether those closest to the individual (i.e. referent others) approve or disapprove of registering to become an organ donor and their motivation to comply with these referent others b. Descriptive Norm – Belief about whether those closest to the individual perform the behavior 3. Perceived Behavioral Control towards Registering – Whether exposure to various factors would make it easier or harder to register as an organ donor. 4. Self-Efficacy towards Registering – The perception of self-confidence to register as an organ donor and complete the various tasks required to complete the behavior. 5. Intention to Register as an Organ Donor – How likely is it that someone intends to register as an organ donor within the next twelve months from taking this survey, if not done so.

• Demographic Factors o Age o Gender o Race/Ethnicity o Highest education level completed o Religiosity o Annual Household Income o Exposure to media messages about organ donation

Figure 2.4: The operational definitions that make up this modified version of the Integrated Behavioral Model

Previous studies in the literature reviewing organ donation attitudes and behaviors

have used similar models, and other models such as the Theory of Planned Behavior,

were reviewed prior to the creation of this version of the IBM.19,42,47,98-100 This was

performed since the IBM has components of these various theories.

Demographic variables were chosen due to their potential influence on the decision to register as an organ donor. This was evidenced across the literature review process. Age, and gender are common demographic variables and were included in a national survey examining attitudes and behaviors of organ donation.37 This study identified the large difference between support of organ donation and the act of registering. Ethnicities and education have often been found to in the literature to be factors that turn patients away from becoming donors for multiple reasons, including: negative perceptions of the healthcare system, prior exploitation of minorities by society, or fear of what is unknown.27,52,64,78 The major racial groups and an ‘other’ were selected.

A religious preference is important because it has been used previously as a reason for not registering, stating that the faith of the individual does not support organ donation.

Many religions broadly support the concept of organ donation.51 Media exposure was selected due to literature that has identified several media types as sources for their reasons to deny registering as an organ donor.41,76

In addition to the IBM, the Precaution Adaption Process Model (PAPM) was used. The purpose of this additional framework was to assess non-donor’s current state of readiness to register. Originally designed to assess the adoption of precautionary behaviors following the warnings of high radon levels in home,101,102 the theory has since been used to study a variety of situations that threaten the health status of the individual.103-105 A study was found that looked at staging individuals within the PAPM, identifying the factors that helped influence a family to accept or decline a request for organ donation following the death of an individual in their family.106 The investigators

elected to use this theory in one item of the survey instrument. Figure 2.5 displays the

PAPM and its application into this study.

Stage 3: Stage 1: Stage 2: Stage 5: Undecided Stage 6: Stage 7: Unaware Unengaged Decided about Acting Maintenance of Issue by Issue TO ACT Acting

Stage 4: Decided NOT TO ACT Figure 2.5: The original PAPM (above), and its application to the current study and non- donors (below).

Stage 1: Stage 2: Stage 3: Stage 5: Stage 6: Never heard Never Undecided Decided TO Already about thought about REGISTER, registered registering about registering but have as an organ to be an registering as an organ not done so donor organ donor to be an donor yet organ donor

Stage 4: Decided NOT TO REGISTER as an organ donor

Chapter 3

Methodology

This chapter will describe the methods used to complete this study. It is divided into the following sections: study design, theoretical framework, eligibility criteria, survey development and testing, data collection, data entry and scoring, and data analysis.

3.1 Study Design

This was a cross-sectional, survey based, exploratory study. Eligible respondents were identified utilizing the online crowdsourcing service Amazon Mechanical Turk

(AMT, MTurk) as a convenience sample. Respondents took the survey electronically utilizing Qualtrics, a licensed survey vendor offered through the University of Toledo.

A sample size for the survey was calculated utilizing Raosoft® Sample Size

Calculator.107 Using the estimated population of the United States for 2016 of 322.7 million,108 a 95% confidence interval, and a 5% margin of error, a sample size of 385 responses would be required to perform statistical analyses. In order to complete a post- hoc analysis to confirm validity at the recommended respondent to item ratio of 10:1, an additional 115 respondents are needed to allow for appropriate testing.109 Therefore, it

was determined that the sample size would be 500 respondents. The survey was removed from Amazon Mechanical Turk following the completion of this goal.

3.2 Theoretical Framework

The Integrated Behavioral Model (IBM, 1992), introduced earlier, served as the theoretical framework for the study. This theory states that attitudes towards a behavior, perceived norms, and personal agency are factors that influence a person’s intention to engage in a specific health behavior. This intent to perform the behavior was strongly related to the action of performing the behavior.110

Attitudes were viewed in this study as the responder’s thoughts/feelings regarding the act of registering to become an organ donor. This construct was composed of behavioral beliefs, or what the individual believes about the act of registering to become an organ donor, and their evaluation of that behavior (i.e., the value the respondent places on the perceived outcomes of performing the behavior). Perceived norms involved the respondent’s perceptions of the thoughts and opinions of people closest to them and whether the respondent is motivated to do what these significant others felt he/she should do regarding the decision to register. This was composed of normative beliefs, or who the individual feels are closest to them, and their motivation to comply with what those closest to the individual believed about organ donation. With the modification of the theory, two additional constructs were applied. Self-efficacy was utilized, which examined a respondent’s self-confidence to perform certain tasks associated with registering as an organ donor, such as completing or finding forms, or having appropriate

conversations with health care providers and loved ones. Perceived control was also used,

which examined factors that the responder believes may make it easier or harder to carry

out the action of registering as an organ donor. Figure 2.4 provides a listing of the

operational definitions utilized in this study.

The IBM believes that a person’s attitudes, perceived norms, and personal agency

towards becoming an organ donor shape the likelihood that one will register as one. By

using this theory, the construct(s) that explain the greatest amount of variance in the

decision to register can be identified and utilized to design or reshape interventions to

increase the likelihood of registering as an organ donor.110 Since the investigators cannot

determine whether a participant carried out the action of registering as a donor, this study

did not seek to measure behavior.

Attitudes towards Registering Experiential Attitude

Instrumental Attitude

Perceived Norms towards Registering

Demographics Injunctive Norm Intention to Age, Sex, Race/Ethnicity, Descriptive Norm Register in Next Highest Education Level, Twelve Months Annual Household Income Perceived Control towards Registering as an Organ Donor Figure 3.1: A modified version of the Integrated Behavioral Model Self-Efficacy of Registering as an utilized for this study Organ Donor

Figure 3.1 displays a model of the modified TPB utilized within this study. The

original TPB prior to modification can be found in Chapter 2.

The Precaution Adaption Process Model (PAPM, 1988) was also used in this

study (Figure 3.2). Non-donors were asked to assess their readiness to register as an

organ donor by identifying which stage of the PAPM best fit their current beliefs.

Responses were used to categorize non-donors into the various stages of the PAPM.

Stage 4: Figure 3.2: The version of Decided the PAPM used within this NOT TO study. REGISTER as an organ donor

3.3 Eligibility Criteria

To be eligible to participate in this study, participants had to meet the

requirements established by Amazon Mechanical Turk. An email response from Amazon

Mechanical Turk is available for review in Appendix B. Workers that perform surveys

are required to be 18 years of age at minimum. They must also provide a valid

registration to Amazon (which Amazon Mechanical Turk falls under), a valid email

address, phone number, and physical address. None of this information could be obtained by the researchers. If workers met the requirements set forth by Amazon

Mechanical Turk, a respondent may be registered and eligible to participate in any assignment posted to the site, unless the survey administrator sets additional criteria that includes/excludes responders. Some of these may include filtering workers by geographical location or other demographic variables, such as education, Facebook users, political party, etc. Most of these additional criteria require further fees. There are no geographical restrictions to who may be able to use AMT. Most responders using

Amazon Mechanical Turk are from the U.S., female, with an average age of 36.111

Two exclusion criteria were set by the authors for participation. First, respondents were required to be U.S. citizens or permanent residents for a minimum of five (5) years.

Since the United Network for Organ Sharing (UNOS) allows non-U.S. citizens to be donors, permanent residents were included if they had been residents for five years to allow for time to familiarize themselves with U.S. culture.54 Respondents had to also be able to read and understand the English language.

3.4 Survey Development & Testing

The literature did not identify a survey that adequately answered the proposed research questions. A survey was therefore created.

Face validity of the survey began with a comprehensive review of the literature to identify attitudes, referent others, and confidence to register. This information was used to structure potential items for each survey construct. These potential items were tested in

elicitation interviews with a convenience sample of twenty-one random volunteers who answered an ad on Facebook calling for volunteers. These volunteers matched social demographics similar to Amazon Mechanical Turk (described previously). During the interviews, participants were asked to discuss their personal attitudes towards registering, support of referent others and their motivation to comply, and whether they felt informed and able to register. Participants were asked to respond openly and freely towards these questions while the researcher marked their responses and whether they matched different items proposed from the literature. Anything described or mentioned that did not match and item was written openly as an open response by the researcher. Results from the elicitation interviews can be found in Appendix A.

Most participants in the elicitation interview were white females who had completed at least some form of high school or college degree (either associate or bachelor degree).

Data obtained from the elicitation interviews were used to develop the first draft of the survey. After the first draft was completed, the investigators established face validity of the instrument through numerous reviews and draft edits. Content validity was established by thorough reviews from four researchers who were well-established in organ donation research and/or health behavior theory. These established professionals were found through both their contributions to the literature or their professional connections to the researchers. The names of these experts are available in Appendix C.

Feedback was incorporated into additional versions until the researchers agreed upon a final version. This final version was then tested for readability by using both the Simple

Measure of Gobbledygook (SMOG) and Fry Graph Readability Formulas.112,113 Both 53

were utilized to ensure that the survey met the average American reading level, which has been established as the seventh grade.114 SMOG found the survey was at the seventh grade reading level, while the Fry Graph Readability Formula found the survey to be between the sixth and seventh grade reading levels.

A convenience sample of thirty-five individuals were recruited to perform a test- retest pilot. This was done to establish the stability-reliability of the survey instrument.

Ten of these respondents were not registered organ donors. Respondents were given a link to the survey online through Qualtrics and given a week to complete the survey. One week following, the volunteers were sent another link to take the survey again. The paired surveys were analyzed for stability reliability using Pearson’s Correlation. Internal reliability and construct validity of the instrument were determined by post-hoc analysis using Cronbach’s alpha and exploratory factor analysis, respectively. Results from each of these tests are available in Chapter 4.

The final version of the survey included 88-items and 11-sections (Appendix D).

The first section (Section A) was comprised of the informed consent information required by the Social and Behavioral Science Institutional Review Board (IRB) at the University of Toledo. Seven questions comprised Section A. Three screening questions asked if responders were over the age of eighteen, if they were a U.S. citizen or permanent resident for five years or more, and if they could read/understand the English language. A

‘no’ response to any of the above would disqualify the responder. One question asked whether a responder was a current organ donor. A ‘yes’ response took the responder to

Section F, while ‘no’ or ‘unsure’ allowed the responder to proceed through the full survey. This was done to prevent registered donors from answering irrelevant questions 54

regarding an action that they had already performed. The final question asks for an intention response as to whether the responder intends to register within the next twelve months with either a yes, no, or unsure response choice. Additionally, there is a second likelihood of registering as an organ donor question, measured on a 7-point Likert Scale ranging from Very Unlikely to Very Likely. The final question utilizes the Precaution

Adaption Process Model (PAPM) to ask the responder’s current state of readiness to register as an organ donor. Options ranged from: never hearing about registering as an organ donor, never really thought about registering as an organ donor, undecided about registering, decided that I do not want to register, decided to register but have not done so, and already registered as a donor. If anyone indicated that they were already registered as a donor, they would be redirected to Section F as before.

Section B examined attitudes towards registering as an organ donor. Direct items were measured on semantic differential scales including ‘uncomfortable-comfortable,’

‘unpleasant-pleasant,’ ‘bad-good,’ and ‘worthless-valuable.’ Indirect attitudes were measured with five items on 7-point Likert Scales ranging from Very Unlikely to Very

Likely, while five items on their evaluations of these beliefs were also measured on 7- point Likert Scales, ranging from Very Unimportant to Very Important.

Section C identified subjective norms using eight indirect measures by examining the respondent’s beliefs about referent others’ opinions on registering to become an organ donor (four items) and their motivation to comply with that individual (four items). These were measured on 7-point Likert Scales ranging from Strongly Disagree to Strongly

Agree. A ‘not applicable’ option was offered for respondents whose parents were no longer living, or did not have a spouse/significant other. Two direct items examined 55

whether respondents felt that most people they knew would approve of them registering, and if they agreed that most people they know have already registered. Both items were measured on 7-point Likert Scales ranging from Strongly Disagree to Strongly Agree.

Section D reviewed self-efficacy and assess the respondents’ beliefs regarding their ability to register as an organ donor. One direct item asks a responder to rate how certain they were that they could register, which wasa measured on a 7-point Likert Scale ranging from Certain I Could Not to Certain I Could. Five items, using the same scale, examined various actions that are associated with registering as an organ donor, including finding the forms to register, completing these forms, communicate their wishes to both loved ones and health care providers, and register with the next renewal of their state- issued identification card. Following these items, perceived behavioral control was assessed utilizing one direct measure item and twelve indirect items. Perceived behavioral control assessed the impact of various factors that may make it easier or more difficult to register as an organ donor. Both the direct and indirect items were measured on 7-point Likert Scales ranging from Very Difficult to Very Easy.

Section E contained five miscellaneous items that examined a respondent’s agreement with various beliefs about organ donation and transplantation. These beliefs were identified through the literature as negative beliefs both processes.40,64,74,83 Sections

F and G contain six and four items that examined attitudes and subjective norms, respectively. These questions were phrased for both registered organ donors and non- donors to answer accordingly.

Section G examined encounters/exposures to various media messages about organ donation, registration, or transplantation over the past six months. These message sources 56

included radio, TV shows/movies, Hollywood movies, newspapers/magazines, books/electronic books, conversations with doctors/health care providers, and conversations with loved ones. Options for responses included none, 1 to 3, 4 to 6, and more than 6.

Section I contained three items that reviewed perceptions regarding pharmacist involvement in organ donation education. The first item presented a list of health care professionals and allowed respondents to select any one on that list that they felt would be the most effective on educating the public on how to register as an organ donor.

Respondents could select as many option as they felt were appropriate, and were allowed a write-in/other option if they felt any other individuals were more appropriate for the role than were provided. The remaining two items asked whether respondents felt that educating the public about registering as an organ donor was an appropriate role for the pharmacist, and whether people would be receptive to the pharmacist initiating this discussion at a routine pharmacy visit. A respondent could select either yes, no, or unsure.

Section J examined religiosity using a modified version of the Duke University

Religion Index.115 Five items were used in this section. The first two items assessed frequency of attendance to religious functions (church, mosque, temple, etc.) and frequency of time spent performing spiritual activities (prayer, meditation, reading sacred books, etc.). Both items were measured on five-point frequency scales. The attendance scale options included never, once a year or less, a few times a year, once a week, and more than once a week. The second scale ranged from rarely/never, a few times a month, once a week, two or more times a week, daily, and more than once a day. The three 57

remaining items examined religious and spiritual beliefs and their impact on the daily life of the respondent. These included experiencing the presence of the Divine (God, Allah,

Jehovah, or other Gods), whether religious beliefs shaped their approach to life, and if they try hard to apply their spiritual values to their decisions, attitudes, and actions. All three items were measured on a 5-point Likert scale ranging from Definitely not True to

Definitely True of Me.

Section K asked seven demographic questions, including the respondent’s age, gender, race/ethnicity, highest level of education completed, gross household income, and marital status. The final question offered respondents a link to Donate Life America for more information regarding registering as an organ donor.116 The link was only displayed to respondents who selected ‘yes.’

3.5 Data Collection

The University of Toledo Social, Behavioral, and Educational Institutional

Review Board (IRB) approved the study on December 2, 2016. The IRB approval information and informed consent notice are available in Appendix E. After IRB approval, completion of a finalized version of the instrument, and test-retest piloting, the survey was loaded into Qualtrics. An Amazon Mechanical Turk Requester account was established and the survey was made viewable for workers on March 10, 2017.

Both registered organ donors and non-donors were permitted to take the survey.

Those who indicated having registered already on either item four or item seven were taken to Section F, which included comparator items for analysis between donors and

non-donors. Respondents who indicated they were not registered as organ donors completed the full survey. Since health behavior theories are utilized to form predictions about what drives behavior towards a future action,117 the researchers believed that only non-donors should be permitted to complete the entire survey for a behavioral analysis.

Upon completion of the survey, Qualtrics generated a random number between 1 and 9,999,999,999. This number was then submitted to Amazon Mechanical Turk as a deidentified link to connect a responder to a survey submission and used strictly for approving financial compensation to respondents. A $0.65 compensation was offered for successful completion of the survey. If a response was considered unsatisfactory by the researchers, AMT allows for the denial of payment by the requester (the researchers).

A completion rate was calculated based on the number of completed responses over total responses collected. Responses were excluded from analysis for either: a) not meeting the inclusion criteria set additionally by the researchers or b) a survey completion rate of <75% of the questions available. The completion rate of this survey on

Amazon Mechanical Turk was 95%, and the description of this can be found in Chapter

3.6 Data Entry and Scoring

Data collection was performed utilizing Qualtrics, a survey vendor licensed through the University of Toledo. After data collection, results were exported into a database file for analyses, which were performed by SPSS Statistics for Windows

(Version 23.0). A report published by Francis, et al. was utilized to determine the scoring methods for this survey and are described as follows.118

Scoring for attitudes was based off a 7-point Likert Scale with values ranging from -3 to +3 for evaluations of the behavior. Negative values indicated a negative response towards the behavior, zero indicating indifference, and positive values indicating a supporting evaluation. This means that ‘Strongly Disagree’ will hold a value of -3, while ‘Disagree’ will hold a value of -2, and so on until ‘Strongly Agree’ holding a value of +3. The attitude itself was interpreted on a 1-7 scale, meaning ‘Strongly

Disagree’ would have a score of 1 and ‘Strongly Agree’ would have a score of 7.

To find the responder’s score of attitudes, the following formula will be followed:

(1a x 1b) + (2a x 2b) + (3a x 3b) + (4a x 4b) + (5a x 5b) = Attitudes. Per the survey in attitudes, an a corresponds to the item regarding their beliefs about registration while b corresponds to the item asking for their evaluation of the behavior. Based on the responses, the correct value (-3 to +3, b; and 1 to 7, a) will populate into the equation and create a final score. Since a 7-point scale is being used, and a total of five (5) questions for this section, the score range can be calculated using the following equation: (7 x ±3) x

5. Seven comes from the 7-point scale, ±3 are the high and low values of the scale, and six is the number of items for this domain. Based on the formula here, this indicates that a responder can score as low as -105, since (7 x -3) x 5 = -105, or as high as 105 since (7 x

+3) x 5 = +105. The following logic is applied to each section, which changes slightly based on the number of items within that section. The 7-point scale and +3 to -3 does not change. For self-efficacy and control abilities, these scores were based on a summation of the responses. Self-efficacy could range from a score of 5 – 35 and a score ≥ 21 indicated 60

high self-efficacy. Perceived behavioral control could range in a score from 11 to 77 with

≥ 45 being an indicator of positive control ability towards registering as an organ donor.

Behavioral intention was measured in two different ways. The first was a yes, no, unsure response while the second was a 7-point Likert scale question ranging from

Strongly Disagree to Strongly Agree. Each question assessed the likelihood that the respondent would register as an organ donor in the next twelve months.

3.7 Data Analyses

Parametric tests were utilized due the data meeting all required assumptions and being normally distributed. Descriptive statistics were used to describe all demographic variables/modifying factors, open-ended responses, media exposures, perceptions of pharmacists as educators for organ donation registration, and PAPM stages identified by non-donors. Student’s T-tests were used to examine the differences between donors and non-donors on the direct measure items for attitudes and subjective norms in Sections F

& G. A Spearman’s Correlation was run to identify if relationships exist between the constructs of attitudes, subjective norms, self-efficacy, and control ability, and the intention to register as an organ donor. Finally, a binary logistic regression was performed to determine what construct(s), if any, have a predictive role on the intention to register as an organ donor for both past and future behavior, as well as determine if any of the demographic variables played a role in the predictive ability of the regression model.

Chapter 4

Results

This chapter describes the result and analyses of the data collected from this study. Chapter 4 is divided into four main sections. The first section describes the readability, validity, and reliability performed on the questionnaire. Section two describes response rates and demographics of the surveyed population. Section three describes responses for each survey section and section four consists of the statistical analyses performed on the data to meet the study’s objectives described in Chapter 1.

4.1 Readability, Validity, and Reliability

A final version of the survey was created for launch after eleven survey revisions, including the edits brought forth from face and content validity reviews (see Appendix

C). Both SMOG and Fry Readability formulas were used from calculators provided from

My Byline Media.112,113 After submitting the survey into the calculator, the results indicated that the survey instrument was written at the seventh-grade level. The intersection of the Fry Readability Graph determines the grade level, which for this survey, was determined to be between the 6th and 7th grade reading levels. This graph, generated by Byline Media, can be found in Figure 4.1.

Figure 4.1: A graphical display of the results of the Fry Readability Formula, which intersects the average number of sentences and syllables per 100 words. This formula shows that the readability of this survey is between the 6th and 7th grade reading levels.

Test-retest reliability-stability was performed to establish stability-reliability of the instrument and can be seen in Table 4.1. This was performed from the results of ten non-donors from the convenience sample who took the survey both times in the test- retest pilot. Each of the four constructs from the proposed theoretical framework, the

PAPM stages, and behavioral intention were found to be highly correlated with each other and found to be significant (p < 0.001). This showed that the instrument was stable and reliable over time.

Table 4.1: Test-Retest Stability-Reliability Pearson’s Correlation Coefficients (n = 10)

Construct Correlation Coefficient P-values Intention 0.816 p < 0.001 PAPM 0.873 p < 0.001 Attitudes 0.694 p < 0.001 Descriptive Norms 0.920 p < 0.001 Self-Efficacy 0.981 p < 0.001 Perceived Control 0.944 p < 0.001

Post-hoc validity and reliability were established by using a Principle Component

Analysis (PCA) and Cronbach’s Alpha, respectively. PCA was run using the indirect measured items and their matched evaluations (if applicable), since these were the items used to determine scores of each construct for analysis. These items included ten items in

Section B (five items on beliefs about registering and their respective evaluations), eight items in Section C (four items on beliefs of referent others about organ donation and their respective motivation to comply counterparts), and seventeen items in Section D (five items over self-efficacy and twelve items over control ability). Items that had evaluations

(attitudes, perceived norms) were multiplied as described in Chapter 3 and evaluated in validity and reliability analyses as a single score for the item pair.

Kaiser-Meyer-Oklin (KMO) Measure of Sampling Adequacy measures whether the sample size for the instrument was correct. A value < 0.6 indicates that the sample size is not adequate for analysis. This was important to note since only the responses from non-donors were used in the analysis (see Chapter 3). The KMO was measured at

0.765 which indicated that the number of responses was adequate for analysis. Bartlett’s

Test of Sphericity is a measure to determine if there is at least one significant correlation within the items in this instrument, and should be identified as significant. 64

Table 4.2: KMO and Bartlett’s Test results

Kaiser-Meyer-Olkin Measure (KMO) of Sampling Adequacy 0.711 Approx. Chi-Square 1599.481 Bartlett’s Test of Sphericity Df 325 Sig. .000

With p < 0.001, this measurement was satisfied. Table 4.2 displays the results from both

KMO and Bartlett’s Test.

PCA reviewed each item for its strength in the analysis through the communalities. Communalities measure a percentage of variance that can be accounted for from each item. All items measured were at 0.494 or above, indicating the needed strength to perform an analysis.

PCA found a total of seven (7) components with Eigenvalues greater than 1. A visual inspect of the Scree Plot for the inflection point (Figure 4.2), as well as parallel analysis 119, were run to determine the correct number of components to use. The parallel analysis generated random Eigenvalues utilizing correlation matrices, which were then compared to the Eigenvalues extracted from the survey data. If an Eigenvalue from the dataset for a component was larger than the Eigenvalue found from the parallel analysis, the component was kept. These results can be viewed in Table 4.3. The parallel analysis indicated five components, but the Scree Plot identified six, and the Scree Plot was chosen for the final acceptance. This was more than the four originally planned for using the theoretical framework. Table 4.4 displays the results from the PCA using Varimax with Kaiser Normalization as the rotation method with a six-iteration convergence.

Figure 4.2: Scree Plot used for PCA – Inflection Point

Table 4.3: Eigenvalue Comparison between Survey Data and Parallel Analysis

Eigenvalue Retain or Component Eigenvalue (Data) (Parallel Analysis) Discard? 1 1.7718 5.871 Retain 2 1.6457 3.617 Retain 3 1.5404 2.441 Retain 4 1.463 2.091 Retain 5 1.4145 1.615 Retain 6 1.33489 1.299 Retain 7 1.2754 1.065 Discard

Table 4.4: Principle Component Analysis (PCA) for control ability (items 1-12), self- efficacy (items 13-18), attitudes (behavioral belief multiplied by its evaluation; items 19- 23); and perceived norm (referent others’ beliefs multiplied by motivation to comply; items 24-27).

Componenta Item Control Control Items Self- Attitudes Attitudes Descriptive # Ability Ability Efficacy (+) (-) Norms (+) (-) The following would make it easier/difficult to register as a donor… 1 0.672 Hearing a promotional message on the radio about organ donation … Hearing about someone 2 that you know who really 0.790 needs a transplant … Seeing a TV show that 3 0.788 promoted organ donation … Seeing a movie that 4 0.797 promoted organ donation … Seeing something on 5 social media that promoted 0.776 organ donation … Seeing or hearing about 6 someone who donated an 0.620 organ while still living 7 … Seeing an article in the newspaper or in a magazine 0.790 that promoted organ donation 8 … Having a conversation with a doctor or other health 0.758 care provider about organ donation 9 … Having a conversation with loved ones about organ 0.676 donation 10 … Hearing or seeing a story about an organ transplant 0.704 procedure that went terribly wrong

11 … Seeing or hearing about the powerful or wealthy trying to bend the rules to 0.868 get organs ahead of those without power and wealth 12 ... Seeing or hearing something that makes you 0.863 feel uncomfortable about organ donation 13 When it comes to registering as an organ donor, how certain are you that you could do 0.766 each task … Find or locate the online forms to become an organ donor 14 … Fill out the online forms 0.836 to become an organ donor 15 … Communicate your organ donation wishes to family members to make 0.823 sure your wishes are honored 16 … Communicate your organ donation wishes to your physician/health care 0.832 provider to make sure your wishes are honored 17 … Register to become an organ donor the next time 0.774 you renew your license or state ID card 18 Registering as an organ donor would … Provide 0.883 me with a good way to help others 19 … Be an act of selfless 0.880 charity 20 … Probably cause me to talk about donating my 0.344 -0.346 organs with my loved ones 21 … Probably cause me to 0.883 think about my death

22 … Probably remind me that 0.866 I will not live forever 23 The following people would approve of me 0.324 0.496 registering as a donor … My parents 24 … My spouse/significant 0.488 other 25 … My friends 0.817 26 … My healthcare providers (doctor, nurse practitioner, 0.758 physician assistant) aExtraction Method: Principal Component Analysis Varimax Rotation with Kaiser Normalization Standardized factor loadings greater than or equal to .32 are in bold face type Percentage of variance explained = 63.85%

Internal reliability was assessed using Cronbach’s coefficient alpha on the six identified constructs from PCA. Control ability (positive) consisted of nine items that loaded separately from the three items addressing negative control abilities. The internal reliability for these sections were r = 0.866 and r = 0.807, respectively. Self-efficacy contained five items and remained an independent construct with its reliability measured at r = 0.875/ Attitudes separated into two constructs, with three items being positive- based attitudes towards registering to become an organ donor and two items looking towards negative attitudes towards registering to become a donor. The reliability for these two sections were r = 0.699 and r = 0.805, respectively. Perceived norms consisted of four items with a validity measured at r = 0.716. These results, along with the construct’s respective test-retest stability-reliability Pearson’s Correlation coefficients, are summarized in Table 4.5.

Table 4.5: Reliability Statistics utilizing Cronbach’s Alpha

Cronbach’s N of Test-Retest Factor N Construct Alpha items Coefficients

Control Ability I 184 0.866 9 (Positive) 0.944 Control Ability II 184 0.807 3 (Negative) III 184 Self-Efficacy 0.875 5 0.981 Attitudes IV 184 0.699 3 (Positive) 0.694 Attitudes V 184 0.805 2 (Negative) Descriptive VI 184 0.716 4 0.920 Norms

4.2 Completion Rate

At the end of the data collection period (March 10 – March 13, 2017) there were

551 responses collected. Twenty-three (23) responses were disqualified due to incompleteness (< 75% of the survey was completed). An additional three (3) responses were disqualified due to not meeting the additional inclusion criteria that was set forth by the researchers. All three respondents who were disqualified were due to not being U.S.

Citizens or permanent residents for a minimum of five (5) years. Following the removal of these results, a total of 523 responses remained for final analysis. The completion rate for this survey was 95%, and is summarized in Table 4.6.

On average, respondents completed the survey in 7 minutes. This included both registered organ donors and non-donors, and registered donors completed less of the

survey components than non-donors. When reviewed separately, non-donors on average completed the survey in 10 minutes while registered organ donors averaged a completion time of 5 minutes.

Table 4.6: Completion Rate Description (n = 523)

Initial responses from AMT 551 Responses disqualified due to - 23 incompleteness Responses disqualified due to study - 3 criteria Total respondents for analysis 523 (94.9%)

4.3 Respondent Characteristics

Table 4.7 describes the demographics of the study population from Amazon

Mechanical Turk and has three columns. Column one describes the characteristics for all respondents. The last two columns describe these characteristics based on whether the respondent was a registered organ donor, or a non-donor, respectively. Out of the 523 responses collected, 339 (64.8%) were already registered as organ donors and 184

(35.2%) were not registered.

Respondents were balanced between males and females (49.5% vs 49.9%, respectively). More women than men were registered as organ donors (53.4% vs 46.0%, respectively). Most respondents were within the ages of 18 – 44 (80.3%) and were of the

Caucasian ethnicity (79.3%). A small number of respondents identified as African

American (4.6%), Asian (8.6%), or Hispanic/Latino (3.6%). Out of all respondents who 71

identified as African American, Asian, or Hispanic/Latino, those who stated they were not registered as organ donors were 54.2%, 68.9%, and 52.6%, respectively.

Regarding income, the most frequently reported category was a gross annual income was more than $70,000 per year or more than $5,800 per month (25%).

Collectively, respondents ranged from $20,000 - $59,000 per year or $1,700 - $4,900 per month (52.3%). Marital status was most often identified as never married (41.1%), married (38.6%), or a member of an unmarried couple (13.0%).

At the end of the survey, respondents were offered a choice to receive a link to

Donate Life America, a national site for organ donation registration and information for individuals.116 Most respondents declined to receive the link (96.0%), but more individuals who were already registered as organ donors requested the link as compared to those who were not registered (15 versus 6, respectively).

Table 4.7: Respondent Demographics Characteristic All Registered Not Responders Donors Registered N=523 N=339 N=184 (64.8%) (35.2%) Gender Male 259 (49.5%) 156 (46.0%) 103 (56.0%) Female 261 (49.9%) 181 (53.4%) 80 (43.5%) Transgender 2 (0.4%) 1 (0.3%) 1 (0.5%)

Age ` 18-24 59 (11.3%) 34 (10.3%) 25 (13.6%) 25-34 238 (45.5%) 157 (46.3%) 81 (44.0%) 35-44 123 (23.5%) 77 (21.7%) 46 (25.0%) 45-54 57 (10.9%) 45 (13.3%) 12 (6.5%) 55-64 33 (6.3%) 17 (5.0%) 16 (8.7%) 65-74 12 (2.3%) 8 (2.4%) 4 (2.2%) ≥ 75 1 (0.2%) 1 (0.3%) 0

Race/Ethnicity White or Caucasian 415 (79.3%) 290 (85.5%) 125 (67.9%) Black or African American 24 (4.6%) 11 (3.2%) 13 (7.1%) Hispanic or Latino 19 (3.6%) 9 (2.7%) 10 (5.4%) American Indian and Alaskan Native 6 (1.1%) 3 (0.9%) 3 (1.6%) Asian 45 (8.6%) 14 (4.1%) 31 (16.8%) Other 4 (0.8%) 3 (0.9%) 1 (0.5%) Multiracial 10 (1.9%) 8 (2.4%) 2 (1.1%) Education Some high school 4 (0.8%) 3 (0.9%) 1 (0.5%) High school graduate/GED 64 (12.2%) 42 (12.4%) 22 (12.0%) Some college/Associate degree 167 (31.9%) 104 (30.7%) 63 (34.2%) Bachelor degree 173 (38.6%) 141 (41.6%) 73 (39.7%) Higher Educational 74 (14.1%) 49 (14.5%) 25 (13.6%) Degree/Professional Degree (Masters, Ph.D, MD, etc.)

Gross Household Income < $10,000 ( < $830/month) 32 (6.1%) 22 (6.5%) 10 (5.4%) $10,000 - $19,000 ($830- 49 (9.4%) 31 (9.1%) 18 (9.8%) $1,600/month) $20,000 - $29,000 ($1,700- 71 (13.6%) 41 (12.1%) 30 (16.3%) $2,400/month) $30,000 - $39,000 ($2,500- 81 (15.5%) 53 (15.6%) 28 (15.2%) $3,250/month) $40,000 - $49,000 ($3,300- 61 (11.7%) 42 (12.4%) 19 (10.3%) $4,000/month) $50,000 - $59,000 ($4,100- 60 (11.5%) 38 (11.2%) 22 (12.0%) $4,900/month) $60,000 - $69,000 ($5,000- 38 (7.3%) 26 (7.7%) 12 (6.5%) $5,750/month) ≥ $70,000 ( ≥ $5,800/month) 131 (25.0%) 86 (25.4%) 45 (24.5%)

Marital Status Married 202 (38.6%) 126 (37.2%) 76 (41.3%) Widowed 3 (0.6%) 2 (0.6%) 1 (0.5%) Divorced 27 (5.2%) 18 (5.3%) 9 (4.9%) Separated 8 (1.5%) 7 (2.1%) 1 (0.5%) Never married 215 (41.1%) 138 (40.7%) 77 (41.8%) Member of an unmarried couple 68 (13.0%) 48 (14.2%) 20 (10.9%)

Requested Organ Donation Link Yes 21 (4.0%) 15 (4.4%) 6 (3.3%) No 502 (96.0%) 324 (95.6%) 178 (96.7%)

4.4 Item Responses: Donors and Non-Donors

This section examines responses that were answered by both groups (registered

organ donors and non-donors) and offers comparisons between them. The latter section

examines construct items answered only by non-donors. These sections and items

covered included: Section F (Experiential Attitudes), Section G (Subjective and

Descriptive Norms), Section H (Media/Message Exposures), Section I (Perceptions of

Pharmacists as Organ Donation Registration Educators), and Section J (Religiosity). Any

construct items asked of both donors and non-donors were phrased in a way that allowed

those who had already registered as a donor answer the questions.

Sections F measured experiential attitudes for both donors and non-donors on a 7-

point Likert scale ranging from Strongly Disagree to Strongly Agree. The results of this

can be seen in Table 4.8. Those who had already registered as an organ donor averaged

Table 4.8: Experiential Attitudes Comparisons Between Donors and Non-Donors with Differences in Mean Responses Measured by the Independent Samples T-Test

Registering to be a Donor Agreement Non-Donor 95% CI, P-value Donor... Mean (SD) Agreement Mean (SD) Was/would be a 5.73 (± 1.131) 4.20 (± 1.491) 1.288 – 1.784; p < 0.01 positive experience Was/would be scary 2.60 (± 1.609) 4.54 (± 1.792) -2.245 – -1.622; p < 0.01

Was/would be 5.64 (± 1.286) 4.43 (± 1.538) 0.945 – 1.470; p < 0.01 fulfilling Made/would make 2.57 (± 1.603) 4.73 (± 1.780) -2.471 – -1.852; p<0.01 me feel uneasy Made/would make 5.76 (± 1.243) 4.49 (± 1.536) . 1.009 – 1.528; p<0.01 me feel good Made/would make 2.69 (± 1.678) 4.86 (±1.737) -2.471 – -1.860; p<0.01 me nervous

higher agreement for believing that registering “was a positive experience” (μ = 5.73 ±

1.131) when compared to those who were not donors (μ = 4.20 ± 1.491). Registered

donors were also more likely to agree that the experience was fulfilling (μ = 5.64 ±

1.286) and made them feel good (μ = 5.76 ± 1.243). When it came to the process being

scary, making them feel uneasy, or making them feel nervous, registered organ donors

were more likely to disagree (μ = 2.60 ± 1.609, 2.57 ± 1.603, and 2.69 ± 1.678). An

independent samples t-test was run to determine if there was a difference between donors

and non-donors on each of the items measuring experiential attitudes. A significant

difference was observed between donors and non-donors on each item, with donors

agreeing more favorably towards the positive attitudes and disagreeing more with the

negative attitudes (p < 0.001).

Section G examined both subjective and descriptive norms for both donors and

non-donors and measured on a 7-point Likert scale ranging from Strongly Disagree to

Strongly Agree. These results can be seen in Table 4.9. Although closer in range to the

neutral/somewhat agree category, donors were more likely to agree with the statement

Table 4.9: Subjective and Descriptive Norm Comparisons between Donors and Non- Donors with Differences in Mean Responses Measured by the Independent Samples T-Test

Item Measured Donor Agreement Non-Donor Agreement 95% CI, P-value Mean (SD) Mean (SD) Most people I know are 4.90 (± 1.302) 3.13 (± 1.340) 0.122 – 1.526; p < 0.01 registered organ donors My parents are registered 4.85 (± 1.897) 2.84 (± 1.579) 1.686 – 2.327; p < 0.01 organ donors My spouse/significant 5.42 (± 1.823) 2.92 (± 1.864) 2.117 – 2.870; p < 0.01 other is a registered organ donor My friends are registered 4.99 (± 1.159) 3.32 (± 1.394) 1.436 – 1.910; p < 0.01 organ donors

that most people they knew were registered organ donors (μ = 4.90 ± 1.302). This was also applicable to the statements regarding that their parents (μ = 4.85 ± 1.897) and friends (μ = 4.99 ± 1.159) are registered as donors. The highest level of agreement came from the statement regarding that the respondent’s spouse or significant other are registered organ donors (μ = 5.42 ± 1.823). An independent samples t-test was also performed to determine if there were differences in the average agreements between donors and non-donors regarding each item. Registered organ donors had significantly higher average rates of agreement with each item when compared to non-donors (p <

0.01).

Section H examined the reported level of exposure to messages regarding organ donation in the past six months with the results available in Table 4.10. These included various media outlets, such as social media, radio, magazines, and TV; as well as conversations with loved ones and health care providers. Most respondents felt that they did not encounter any forms of messages regarding organ donation, regardless of their registration status. Out of the variety of outlets available, TV shows/movies (28.5%), social media (24.3%), conversations with loved ones (22.9%), and newspapers/magazines

(21.6%) were the most frequently reported for respondents to notice at least one message within the last six months. The least frequently reported for at least one exposure to a message in the past six months included books or electronic books (9.8%), conversations with doctors or health care providers (10.5%), and radio messages (12.2%). An independent samples t-test was performed on the items asking about exposures to conversations with doctors or health care providers and exposures to conversations with loved ones. This test was performed to identify if differences in the means of occurrences 76

in these items existed. Those who were identified as registered organ donors were significantly more likely to have exposures to conversations with doctors or health care providers regarding organ donation (μ = 1.27 ± 0.631) compared to non-donors (μ = 1.10

± 0.384, p < 0.01). Donors on average were also more likely to have exposures to conversations with loved ones (μ = 1.52 ± 0.778) compared to non-donors (μ = 1.23 ±

0.586, p < 0.01).

Table 4.10: Encounters/Exposures to Messages about Organ Donation/Transplantation in the Past Six (6) Months and Compared between Donors and Non-Donors Encounters or exposures to messages about organ Missing donation/transplantation via None 1 to 3 4 to 6 ≥ 7 Values media outlets in the last six (6) months Radio messages 425 (81.3%) 64 (12.2%) 25 (4.8%) 9 (1.7%) 0 Registered Donors (N=339) 266 (78.5%) 44 (13.0%) 23 (6.8%) 6 (1.8%) 0 Non-Donors (N = 184) 159 (86.4%) 20 (10.9%) 2 (1.1%) 3 (1.6%) 0

TV shows or TV movies 324 (62.0%) 149 (28.5%) 40 (7.6%) 10 (1.9%) 0 Registered Donors (N=339) 199 (58.7%) 97 (28.6%) 35 (10.3%) 8 (2.4%) 0 Non-Donors (N = 184) 125 (67.9%) 52 (28.3%) 5 (2.7%) 2 (1.1%) 0

Hollywood movies 393 (75.1%) 100 (19.1%) 23 (4.4%) 10 (1.9%) 0 Registered Donors (N=339) 247 (72.9%) 68 (20.1%) 21 (6.2%) 3 (0.9%) 0 Non-Donors (N = 184) 146 (79.3%) 32 (17.4%) 2 (1.1%) 3 (1.6%) 0

Social media messages 331 (63.3%) 127 (24.3%) 42 (8.0%) 21 (4.0%) 2 (0.4%) Registered Donors (N=339) 201 (59.3%) 91 (26.8%) 31 (9.1%) 15 (4.4%) 1 (0.3%) Non-Donors (N = 184) 130 (70.7%) 36 (19.6%) 11 (6.0%) 6 (3.3%) 1 (0.5%)

Newspapers or magazines 373 (71.3%) 113 (21.6%) 26 (5.0%) 10 (1.9%) 1 (0.2%) Registered Donors (N=339) 234 (69.0%) 75 (22.1%) 21 (6.2%) 8 (2.4%) 1 (0.3%) Non-Donors (N = 184) 139 (75.5%) 38 (20.7%) 5 (2.7%) 2 (1.1%) 0

Books or electronic books 445 (85.1%) 51 (9.8%) 22 (4.2%) 4 (0.8%) 1 (0.2%) Registered Donors (N=339) 278 (82.0%) 40 (11.8%) 20 (5.9%) 1 (0.3%) 0 Non-Donors (N = 184) 167 (90.8%) 11 (6.0%) 2 (1.1%) 3 (1.6%) 1 (0.5%)

Conversations with doctors or 444 (84.9%) 55 (10.5%) 15 (2.9%) 8 (1.5%) 1 (0.2%) healthcare providers Registered Donors (N=339) 275 (81.1%) 43 (12.7%) 13 (3.8%) 7 (2.1%) 1 (0.3%) Non-Donors (N = 184) 169 (91.8%) 12 (6.5%) 2 (1.1%) 1 (0.5%) 0

Conversations with loved ones 362 (69.2%) 120 (22.9%) 25 (4.8%) 16 (3.1%) 0 Registered Donors (N=339) 211 (62.2%) 94 (27.7%) 21 (6.2%) 13 (3.8%) 0 Non-Donors (N = 184) 151 (82.1%) 26 (14.1%) 4 (2.2%) 3 (1.6%) 0

Section I asked three questions regarding perceptions of the pharmacist as educators to the public about registering to become an organ donor. The first item provided a list of various health care providers and asked respondents to select all whom they felt were best suited to provide education. Table 4.11 displays the list and frequencies of all those providers listed. Pharmacists were selected the least overall (n =

54, 10.3%) and by both registered donors (n = 45, 13.3%) and non-donors (n = 9, 4.9%).

Physicians were preferred overall as the top choice for providing this education (n = 394,

75.3%). Responses reported under the ‘Other’ category had the option to provide a written response, which are available for viewing in Appendix E.

Table 4.11: Response Frequencies for Whom Respondents Felt was Best Suited to Provide Education to the Public on Registering to Become an Organ Donor Who would be the best at All educating the public regarding Responders organ donation? N=523 Physicians 394 (75.3%) Nurses 250 (47.8%) Patient Educators/Health Educators 242 (46.3%) Nurse Practitioners 196 (37.5%) Community Health Workers 186 (35.6%) Physician Assistants 180 (34.4%) Medical Social Workers 143 (27.3%) Hospital Chaplain 112 (21.4%) Medical Assistants 103 (19.7%) Pharmacists 54 (10.3%) Other 16 (3.1%)

When asked about whether educating the public on registering to become an organ donor was an appropriate role for the pharmacist, most respondents (n = 267,

51.1%) did not feel this was an appropriate role. Only 136 (26.0%) felt that this was an appropriate role for pharmacists, with 110 of these individuals identifying as already

registered as an organ donor. Most non-donors did not feel this was an appropriate role

for a pharmacist (n = 111, 60.3%). Non-donors also believed that people would not be

receptive to the pharmacist discussing this at routine pharmacy visits (n = 128, 69.6%).

These results can be seen in Table 4.12.

Table 4.12: Response Frequencies for Perceptions on Pharmacists as Public Educators for Organ Donation Registration and Receptiveness to Pharmacist Discussing the Topic at Routine Pharmacy Visits Do you believe that educating the public All Registered Not about how to register as an organ donor Responders Donors Registered is an appropriate role for a pharmacist? N=523 N=339 N=184 Yes 136 (26.0%) 110 (32.4%) 26 (14.1%) Unsure 119 (22.8%) 73 (21.5%) 46 (25.0%) No 267 (51.1%) 156 (46.0%) 111 (60.3%) No Response 1 (0.2%) 0 1 (0.5%) Do you think that people would be receptive to a pharmacist bringing up the topic of organ donation during a routine pharmacy visit? Yes 94 (18.0%) 81 (23.9%) 13 (7.1%) Unsure 126 (24.1%) 84 (24.8%) 42 (22.8%) No 302 (57.7%) 174 (51.3%) 128 (69.6%) No Response 1 (0.2%) 0 1 (0.5%)

Section I examined religiosity using a modified version of the Duke University

Religion Index (DUREL), as discussed previously. Over half of non-donors stated that

they never attend religious meetings (n = 96, 52.2%) and never spent time performing

private spiritual activities (n = 78, 42.4%). Most non-donors also stated that experiencing

the presence of the divine, having religious/spiritual beliefs shape their approach to life,

and trying hard to apply spiritual values to their decisions, attitudes, and actions were

‘definitely not true’ (35.9%, 37.5%, 33.7%, respectively). Registered organ donors had

similar results for their responses. These results are available in Table 4.13.

Table 4.13: Religiosity Responses Compared between Donors and Non-Donors utilizing DUREL. Religiosity Measurements from DUREL Registered Not Donors Registered N=339 N=184 How often do you attend church, mosque, temple, or other religious meetings? Never 177 (52.2%) 96 (52.2%) Once a year or less 56 (16.5%) 29 (15.8%) A few times a year 39 (11.5%) 21 (11.4%) A few times a month 21 (6.2%) 10 (5.4%) Once a week 35 (10.3%) 17 (9.2%) More than once a week 11 (3.2%) 11 (6.0%)

How often do you spend time in private spiritual activities such as prayer, meditation, or reading sacred books?` Never 149 (44.0%) 78 (42.4%) Once a year or less 22 (6.5%) 13 (7.1%) A few times a year 27 (8.0%) 25 (13.6%) A few times a month 35 (10.3%) 16 (8.7%) Once a week 25 (7.4%) 10 (5.4%) More than once a week 81 (23.9%) 42 (22.8%)

I experience the presence of the divine Definitely not true 154 (45.4%) 66 (35.9%) Tends not to be true 21 (6.2%) 17 (9.2%) Unsure 35 (10.3%) 29 (15.8%) Tends to be true 69 (20.4%) 38 (20.7%) Definitely true 60 (17.7%) 34 (18.5%)

My religious/spiritual beliefs help shape my whole approach to life Definitely not true 141 (41.6%) 69 (37.5%) Tends not to be true 38 (11.2%) 19 (10.3%) Unsure 34 (10.0%) 13 (7.1%) Tends to be true 66 (19.5%) 49 (26.6%) Definitely true 59 (17.4%) 34 (18.5%)

I try hard to apply my spiritual and values to my decision, attitudes, and actions Definitely not true 137 (40.4%) 62 (33.7%) Tends not to be true 25 (7.4%) 19 (10.3%) Unsure 31 (9.1%) 18 (9.8%) Tends to be true 84 (24.8%) 52 (28.3%) Definitely true 61 (18. 0%) 33 (17.9%)

4.5 Item Responses: Non-Donors

The following section examines the responses provided by non-donors who took the full 88-item survey. Non-donors were first asked to rate their current status on their decision to register as an organ donor utilizing the Precaution Adaption Process Model

(PAPM). Table 4.14 displays the results. Most respondents were undecided about whether to register or not (n = 74, 40.2%), followed by deciding that they did not want to register (n = 52, 28.3%), and never having really thought about registering as an organ donor (n = 43, 23.4%).

Table 4.14: PAPM Stages Identified by Non- Donors

PAPM Stages: Non-Donors Total (%) N=184 I have never heard about registering to become an organ 2 (1.1%) donor before. I have never really thought about registering to become an organ 43 (23.4%) donor before. I am undecided about registering 74 (40.2%) to become an organ donor. I have thought about it and I decided that I DO NOT want to 52 (28.3%) register as an organ donor. I have decided to register as an organ donor, but have not done so 13 (7.1%) yet. I have already registered as an 0 organ donor

Table 4.15 and Table 4.16 display the frequencies from the Direct Experiential

Attitudes and Instrumental Attitudes with their evaluations, respectively. On average, non-donors felt that registering as a donor was more uncomfortable (3.40 ± 1.737) and

unpleasant (3.50 ± 1.664), but had more neutral to positive beliefs that registering as a

donor was a good (4.34 ± 1.845) or valuable action (4.72 ± 1.771). Non-donors held more

positive beliefs that registering would provide them with a good way to help others, and

also be an act of selfless charity, but were neutral/positive (in frequencies) that registering

would prompt them to discuss donating organs with their loved ones (4.63 ± 1.824).

Table 4.15: Experiential Attitudes – Direct, as Reported by Non-Donors

For me, registering as an Item # 1 2 3 4 5 6 7 Mean ± SD organ donor would be 8 Uncomfortable … Comfortable 35 26 31 47 24 9 12 3.40 (1.737)

9 Unpleasant … Pleasant 30 25 25 59 24 10 10 3.50 (1.664) 10 Bad … Good 23 10 12 59 25 27 28 4.34 (1.845) 11 Worthless … Valuable 20 2 12 38 46 33 32 4.72 (1.771) Measured on a 1 -7 scale, 1 = worst (i.e. uncomfortable), 7 = best (i.e. comfortable)

Table 4.16 Instrumental Attitudes – Indirect Measures and their Respective Evaluations, as Reported by Non-Donors.

For me, registering as an VU US VL Item # Mean ± SD organ donor would . . . 1 2 3 4 5 6 7 Provide me with a good way to 12 7 1 3 27 51 44 51 5.45 (1.425) help others

13 Be an act of self-less chairty 12 3 6 22 37 44 60 5.40 (1.686) Probably cause me to think 14 13 13 8 26 32 36 56 5.08 (1.873) about my death Probably cause me to talk about 15 donating my organs with my 20 6 15 37 42 31 33 4.63 (1.824) loved ones Probably remind me that I will 16 20 9 9 26 27 40 53 4.97 (1.976) not live forever Measured on a 7-point Likert scale. VU = Very Unlikely, US = Unsure, VL = Very Likely

VU US VI Item # How important is it to you . . . Mean ± SD -3 -2 -1 0 +1 +2 +3 17 Help others? 6 3 13 12 54 54 42 1.36 (1.450)

18 Do acts of self-less chairty? 10 9 14 23 46 47 33 0.97 (1.660) 19 Think about your death? 46 30 21 43 21 10 13 -1.24 (1.852) Talked to your loved ones about your decision to either 20 33 24 11 32 35 31 17 -0.05 (1.983) donoate or not donate your organs? Be reminded that you will not 21 47 32 26 28 20 18 13 -1.26 (1.935) live forever? Measured on a 7-point Likert scale. VU = Very Unimportant, US = Unsure, VI = Very Important

Table 4.17 shows the subjective norms of the individuals and their motivation to

comply with the referent others. Non-donors were neutral in the belief that their parents

(0.82 ± 1.728) or their spouses/significant others (0.96 ± 1.774) would approve their

decision to register, but agreed more towards their friends (1.15 ± 1.337) and their health

care providers (1.71 ± 1.341). Regarding their motivation to comply with referent others,

non-donors were most likely to do what their significant other/spouse felt that they

should do (4.98 ± 1.765). Doing what their parents felt they should do was more neutral

(4.05 ± 1.883), while doing what their health care providers or friends felt they should do

were not likely to occur (3.71 ± 1.646 and 3.64 ± 1.553, respectively).

Table 4.17: Evaluation of Beliefs and their Respective Motivation to Comply, as Reported by Non-Donors The following people would SD D SwD NS SwA A SA NA Item # approve of me registering as Mean ± SD -3 -2 -1 0 +1 +2 +3 - an organ donor 22 My parents 7 19 1 43 21 43 29 21 0.82 (1.728)

23 My spouse/significant other 10 6 7 32 15 44 27 43 0.96 (1.774) 24 My friends 3 2 8 53 27 57 28 4 1.15 (1.337) My healthcare providers 25 (doctor, nurse practitioner, 3 2 0 40 15 53 65 6 1.71 (1.341) physician assistant) Measured on a 7-point Likert scale. SD = Strongly Disagree, D = Disagree, SwD = Somewhat Disagree, NS = Not Sure, SwA = Somewhat Agree, A = Agree, SA = Strongly Agree, NA = Not Applicable1.185), Regarding registering to become an organ donor, how VU U SwU NS SwL L VL NA Item # likely is it that you would Mean ± SD 1 2 3 4 5 6 7 - what the people below think that you should do? 26 My parents 25 7 19 41 22 20 18 32 4.05 (1.883)

27 My spouse/significant other 11 3 14 35 21 27 43 29 4.98 (1.765) 28 My friends 25 16 20 68 21 16 4 14 3.64 (1.553) My healthcare providers 29 (doctor, nurse practitioner, 24 17 18 55 21 22 4 23 3.71 (1.646) physician assistant) Measured on a 7-point Likert scale. VU = Very Unlikely, U = Unlikely, SwU = Somewhat Unlikely, NS = Not Sure, SwL = Somewhat Likely, L = Likely, VL = Very Likely, NA = Not Applicablle

Subjective and Descriptive norms were also assessed using direct items, which

can be seen in Table 4.18. Non-donors on average rated higher agreement that most

people would approve of them registering as an organ donor (5.15 ± 1.185), but disagreed

that most people they knew were already registered as organ donors (3.19 ± 1.395).

Table 4.18: Subjective and Descriptive Norm Items – Direct Measures as Answered by Non- Donors

Direct Measures of SD SA Item # Subjective and Descriptive Mean ± SD 1 2 3 4 5 6 7 Norms In general, most people that I 30 know would approve of me 1 5 9 33 56 63 17 5.15 (1.185) registering as an organ donor Most people that I know have 31 already registered to be an 22 48 26 58 23 5 2 3.19 (1.395) organ donor Measured on a 7-point Likert scale. SD = Strongly Disagree, SA = Strongly Agree

Self-efficacy results are available in Table 4.19. Non-donors had higher

agreement that they were certain that they could complete the action of registering as a

donor (5.53 ± 1.653). They were also certain that they could complete various steps in

registering, including finding (6.09 ± 1.249) and completing (6.07 ± 1.293) the online

registration forms, communicate their wishes to both their health care providers (5.66 ±

1.474) and family members (5.70 ± 1.495), and register at their next driver’s license or

state ID renewal (5.72 ± 1.591).

Table 4.19: Self-Efficacy, Direct and Indirect Measures Answered by Non -Donors

CICN CIC Item # Self-Efficacy Mean ± SD 1 2 3 4 5 6 7 How certain are you that you 32 could register as an organ 7 6 6 28 28 34 75 5.53 (1.653) donor?

When it comes to registering as an organ donor, how CICN NS CIC Item # certain are you that you Mean ± SD 1 2 3 4 5 6 7 could do each of the following tasks? Find or locate the online 33 forms to become an organ 2 0 2 24 21 33 102 6.09 (1.249) donor Fill out the online forms to 2 1 3 23 19 34 101 6.07 (1.293) 34 become an organ donor Communicate your organ donation wishes to family 6 1 4 28 33 33 79 5.70 (1.495) 35 members to make sure your wishes are honored Communicate your organ donation wishes to your 36 physicain/health care 4 1 7 34 27 34 77 5.66 (1.474) provider to make sure your wishes are honored Register to become an organ donor the next time you 8 1 4 29 24 32 86 5.72 (1.591) 37 renew your license or state ID card Measured on a 7-point Likert scale. CICN = Certain I Could Not, NS = Not Sure CIC = Certain I Could

Table 4.20 shows the responses from the perceived behavioral control section.

Most respondents felt that registering as an organ donor was an easy process (5.33 ±

1.853). Most respondents were neutral regarding responses, indicating that they would

have no effect on the ease or difficulty of registering. Seeing/hearing about a transplant

procedure that went terribly wrong (3.23 ± 1.737), seeing/hearing about the powerful or

wealthy bend the rules to get organs ahead of those with power or wealth (2.83 ± 1.640),

or seeing/hearing anything that made you uncomfortable about organ donation (2.93 ±

1.599) made it more difficult. Respondents felt that if they heard about someone they

knew who really needed a transplant performed, this would make it easier for them to

Table 4.20: Control Ability, Direct and Indirect Measures Answered by Non-Donors

Difficult Easy Item # Self-Efficacy Mean ± SD 1 2 3 4 5 6 7 Registering as an organ 38 12 6 10 21 24 32 66 5.33 (1.853) donor would be . . .

Continued on the next page

Please indicate how each item below may make it VD NE VE Item # easier or more difficult to for Mean ± SD 1 2 3 4 5 6 7 you to register as an organ donor Hearing a promotional 39 message on the radio about 6 3 8 120 31 9 7 4.21 (1.035) organ donation Hearing about someone that 40 you know who really needs a 5 1 5 44 43 47 38 5.25 (1.368) transplant Hearing or seeing a story about an organ transplant 40 29 30 53 9 12 11 3.23 (1.737) 41 procedure that went terribly wrong Seeing a TV show that 5 3 17 100 34 15 10 4.30 (1.147) 42 promoted organ donation Seeing a movie that promoted 5 4 6 97 42 20 9 4.44 (1.136) 43 organ donation Seeing or hearing about the powerful or wealthy tryting to 44 bend the rules to get organs 59 27 25 49 13 6 5 2.83 (1.640) ahead of those without power/wealth Seeing something on social 45 media that promoted organ 8 5 14 98 39 10 9 4.21 (1.191) donation Seeing or hearing about 46 someone who donated an 10 5 18 70 43 24 13 4.27 (1.057) organ while still living Seeing or hearing something that makes you feel 47 32 37 41 14 8 5 2.93 (1.599) 47 uncomfortable about organ donation Seeing an article in the 48 newspaper or magazine that 5 3 12 106 41 9 8 4.27 (1.057) promoted organ donation Having a conversation with a 49 doctor or other health care 6 5 7 75 60 22 8 4.51 (1.181) provider about organ donation Having a conversation with 50 loved ones about organ 5 7 12 56 58 31 15 4.67 (1.319) donation Measured on a 7-point Likert scale. VD = Would Make it Very Difficult, NE = No Effect, VE = Would Make it Very Easy 89

Several items were added to the survey that were not associated with the IBM

constructs. These items were derived from a review of the literature that revealed some of

the beliefs that non-donors held and cited as reasons for why they chose not to register.

Each item can be seen in Table 4.21, along with their responses. Most respondents were

neutral on whether they believed that organ donation was just a big business where

certain people in power made a lot of money (4.02 ± 1.616). Non-donors in this

population leaned more towards not believing that donating organs was not appropriate

from their religious perspective (2.45 ± 1.543). They also did not believe organ donors

received poorer quality of care in the hospital (2.95 ± 1.518) or that doctors worked

Table 4.21: Miscellaneous Items Covering Various Beliefs about Organ Donation and Registration Identified within the Literature, Answered by Non-Donors

SD SA Item # Misc. Items Mean ± SD 1 2 3 4 5 6 7 Organ donation is a big business in which certain 51 14 19 33 50 33 21 14 4.02 (1.616) people in power make a lot of money Those in charge of getting people to sign up to be an 52 23 31 46 50 17 11 6 3.35 (1.504) organ donor cannot be trusted Doctors work harder to save patients who are NOT organ 53 32 43 30 47 21 3 8 3.13 (1.575) donors than they do patients who are organ donors In the hospital setting, organ donors receive poorer 54 quality of care compared to 35 53 23 47 16 6 4 2.95 (1.518) people who are not organ donors Donating organs is not 55 appropriate from my 72 40 17 34 12 7 1 2.45 (1.543) religious perspectives Measured on a 7-point Likert scale. SD = Strongly Disagree, SA = Strongly Agree 90

harder to save non-donors over the lives of donors (3.35 ± 1.504).

4.6 Relationships Between Direct/Indirect Items, and

Construct Scores with Intention

A Pearson’s Correlation was run between the scores of the direct and indirect items of the constructs from the IBM, which were expected to be positively correlated.118

The direct items in the survey were found to be positively correlated with the indirect items, which can be seen in Table 4.22.

Table 4.22: Direct and Indirect Construct Items and their Pearson’s Correlation Coefficients Construct Correlation (Direct/Indirect P-values Coefficient Items) Attitudes 0.343 p < 0.001 Descriptive Norms 0.649 p < 0.001 Perceived 0.272 p < 0.001 Behavioral Control Self-Efficacy 0.585 p < 0.001

A Spearman’s Correlation was run to determine the strength and direction of associations between the six identified constructs of this instrument and intention to register in the next twelve months. Respondents could select either yes, no, or unsure for their intention to register in the next twelve months. Since a Spearman’s Correlation requires a dichotomous variable to complete, a response indicating ‘unsure’ was recoded to ‘no.’ The data were tested for the presence of a monotonic relationship between each independent variable (the constructs) and the dependent variable (likelihood of

registering an organ donor in the next twelve months). The results of the correlation are available in Table 4.23.

Statistically significant correlations were observed between the likelihood to register as an organ donor and several constructs. A weak, negative correlation was observed between likelihood and the negative attitudes construct (rp = -0.172, p < 0.05).

A weak, positive correlation was observed between likelihood of intention and subjective norms (rp = 0.245, p < 0.01). A weak-moderate, positive correlation was observed between the likelihood of intention to register and both positive attitudes and positive control abilities (rp= 0.362 and 0.370 respectively, p < 0.01).

Table 4.23: Spearman’s Correlation between Intention to Register as an Organ Donor in the Next Six Months and each of the Six Constructs Construct 1 2 3 4 5 6 7 1. Attitude 1 (+) ------2. Attitude 2 (-) -0.230* ------3. Perceived Norms 0.204* 0.002 - - - - - 4. Control Ability 1 (+) 0.451* -0.164* 0.205* - - - - 5. Control Ability 2 (-) 0.062 -0.114 0.017 0.050 - - - 6. Self-Efficacy 0.204* 0.118 0.207* 0.205* -0.131 - - 7. Likelihood of 0.362* -0.172* 0.245* 0.370* 0.144 -.011 - Intention to Register in 6 months * Significant at p < 0.05.

4.7 Factors that Predict Registration (Past and Future)

A binomial logistic regression was preformed to identify which construct, if any, would predict the likelihood of intention to register as an organ donor. Each construct was added into the model with the dichotomous intention to register in the next twelve

months was used as the dependent variable. Table 4.24 shows the results of the set-up for the regression model.

Box-Tidwell (1962) was performed to test for linearity. Each construct was measured and multiplied by the natural log of itself as an interaction. A significant interaction meant that the variable failed the construct of linearity. No values in the interaction were significant, indicating that there were no variables that failed the assumption of linearity, meaning all continuous variables were linearly related to the dependent variable.

Four cases within the model were found to have studentized residuals of 12.250,

6.497, 3.374, and 2.584 standard deviations. This indicated that these data were outliers by these many standard deviations. Due to the extremes of the first three outliers, these cases were removed from the analysis while the final case could remain for analysis.

Table 4.24: Set-up Values for Binomial Logistic Regression Model Box-Tidwell (1962) Test for Linearity Control Ability (+) x Ln (Control Ability (+)) p = 0.960 Control Ability (-) x Ln (Control Ability (-)) p = 0.957 Self-Efficacy x Ln (Self-Efficacy) p = 0.957 Perceived Norms x Ln (Perceived Norms) p = 0.958 Attitudes (+) x Ln (Attitudes (+)) p = 0.956 Attitudes (-) x Ln (Attitudes (-)) p = 0.985 Model Tests Omnibus Tests of Model Coefficients p < 0.05 Hosmer and Lemeshow Test p = 0.947 Nagelkerke R2 Value 0.503

The regression model was found to be statistically significant (p < 0.001).

Goodness of fit was assessed using Hosmer and Lemeshow and found to not be statistically significant (p = 0.947), which indicates that the model is a good fit due to its 93

non-significance. Nagelkerke R2 was 0.503, which indicated that the explained variation within the dependent variable (intention to register in the next twelve months) based on this model was 50.3%.

The percentage of accuracy was determined to be 97.2%, meaning the independent variables in the model improved the prediction of the observed cases into their categories of the dependent variable. The sensitivity of the model was 33.3%, but specificity was measured at 99.4%.

Bases on the results of the regression model (Table 4.25), attitudes were the significant predictor for the decision of respondents to not register as organ donors with all other variables held constant. Respondent’s positive attitudes score was 1.1x more likely to affect their intention to register in the next six months over all other variables.

The interaction effect of the demographics variables increased the impact of the positive attitudes to 2.2x more likely to affect intention, but it was no longer significant (p =

0.234). Table 4.24: Results of Binomial Logistic Regression on Future Behavior Construct OR 95% CI P-value Attitude 1 (+) 1.108 1.018 – 1.206 p = 0.023 Attitude 2 (-) 1.094 1.012 – 1.183 p = 0.017 Perceived Norms 1.000 0.974 – 1.027 p = 0.974 Self-Efficacy 1.026 0.787 – 1.336 p = 0.787 Control Ability 1 (+) 1.105 0.936 – 1.305 p = 0.238 Control Ability 2 (-) 1.134 0.920 – 1.398 p = 0.920

A binomial logistic regression was performed using scores obtained from the direct items in the survey instrument to determine if they provided any prediction towards the intention of registering in the next twelve months. These direct items included experiential and instrumental attitudes, injunctive and descriptive norms, perceived 94

behavioral control, and self-efficacy. The demographics of race/ethnicity, education, and income were also present and controlled for.

The regression met the assumptions of Box-Tidwell (Table 4.26). Hosmer and

Lemeshow indicated that the model was a good fit (p = 0.986), and Nagelkerke R2 indicated that 55.6% of the variance in the dependent variable of intention to register in the next twelve months was explained by this model. The model was significant

(p=0.008). The accuracy percentage was 95.9%.

Table 4.26: Set-up for the Binomial Logistic Regression using Direct Item Scores

Box-Tidwell (1962) Test for Linearity

Perceived Behavioral Control x Ln (Perceived p = 0.972 Behavioral Control)

Self-Efficacy x Ln (Self-Efficacy) p = 0.257 Descriptive Norm x Ln (Descriptive Norm) p = 0.334

Injunctive Norm x Ln (Injunctive Norm) p = 0.886 Instrumental Attitudes x Ln (Inst. Attitudes) p = 0.178 Experiential Attitudes x Ln (Experiential p = 0.175 Attitudes) Model Tests Omnibus Tests of Model Coefficients p = 0.008 Hosmer and Lemeshow Test p = 0.986 Nagelkerke R2 Value 0.556

The results of the direct items as predictors for intention are available in Table

4.27. The direct item with the greatest effect on intention to register was self-efficacy

(OR: 2.249, 95% CI: 0.695 – 7.283). However, this was not significant. Odds Ratios for most direct items indicated unfavorable odds ratios towards behavioral intention.

Table 4.27: Results of the Binomial Logistic Regression from Direct Items used within the Survey Instrument

Construct OR 95% CI P-value Experiential Attitudes 0.842 0.615 – 1.152 p = 0.282 Instrumental Attitudes 0.864 0.706 – 1.057 p = 0.155 Injunctive Norm 0.393 0.060 – 2.574 p = 0.330 Descriptive Norm 0.924 0.432 – 1.975 p = 0.837 Self-Efficacy 2.249 0.654 – 7.283 p = 0.176 Perceived Behavioral 0.654 0.178 – 2.405 p = 0.552 Control

When examining past intention to register utilizing attitudes, descriptive norms, and the demographic variables of race, education, and annual household income, attitudes remained the highest predictor of registering as an organ donor (OR: 1.157, 95% CI:

1.096 – 1.222, p < 0.001). Descriptive norms, being of the Asian American ethnicity, and an annual household income of <$10,000 per year were associated with an odds ratio not in favor of registering. These results can be seen in Table 4.28.

Table 4.28: Binomial Logistic Regression Examining Predictors of Past Behavioral Intention

Variable OR 95% CI P-value Attitudes 1.157 1.096 – 1.222 p < 0.001 Descriptive Norms 0.703 0.660 – 0.750 p < 0.001 Race: Caucasian 0.781 0.581 – 3.862 p = 0.762 Race: African American 0.562 0.108 – 2.941 p = 0.495 Race: Hispanic/Latino 0.321 0.047 – 2.219 p = 0.250 Race: American 1.195 0.167 – 8.547 p = 0.859 Indian/Alaskan Native Race: Asian 0.128 0.021 – 0.780 p = 0.026 Some High School 5.021 0.390 – 64.629 p = 0.216 High School Education 1.273 0.432 – 3.755 p = 0.661 Associates Degree 1.363 0.573 – 3.242 p = 0.484 Bachelors and Beyond 1.152 0.511 – 2.595 p = 0.734 <$10,000/year 0.169 0.048 – 0.602 p = 0.006 $10,000-$19,000/year 0.610 0.228 – 1.631 p = 0.325 $20,000-$29,000/year 0.579 0.226 – 1.484 p = 0.255 $30,000-$39,000/year 0.517 0.213 – 1.257 p = 0.145 $40,000-$49,000/year 0.390 0.143 – 1.065 p = 0.066 $50,000-$59,000/year 0.467 0.182 – 1.196 p = 0.112 ≥ $60,000/year 0.627 0.200 – 1.967 p = 0.423

Chapter 5

Discussion

This chapter covers the discussions over all findings reported in Chapter 4, and is broken down into the following broad categories: (1) readability, validity, and reliability,

(2) study response rate & bias, (3) demographic characteristics of participants, (4) application of the Integrated Behavioral Model (IBM), (5) limitations of the study, and

(6) suggestion for future research.

5.1 Validity, Reliability, and Readability

Validity, reliability, and readability were found to have been in favor of this newly designed instrument. Both the SMOG and Fry Readability Formulas to be at the sixth and seventh grade reading levels, which meets the current reading level of the average American adult.120 Both validity and reliability measures were in favor of the instrument despite the addition of two constructs not intended for when performing the

PCA.

Having a newly designed instrument meet these standards is very important.

Meeting sixth and seventh grade reading levels helps to ensure that most Americans can take this survey in the future, and that results achieved from it are both valid and reliable. 98

The literature did not identify a survey that answered the goal and objectives of this study, so one was created. Having this instrument be readable, valid, and reliable improves its ability to be used again in future research when studying differences between donors and non-donors, as well as understanding what can predict organ donation in various populations.

5.2 Completion Rate

This survey was available to workers on Amazon Mechanical Turk for three days before achieving its number of responses. This may be contributed to the compensation offered to workers in exchange for completing the survey, since many available options pay only a few cents for completing the work.121 A small number of responses were discarded due to incompletion or failing to meet the additional criteria, which resulted in the high response rate achieved from this population. Having a high completion rate allows for greater strength in the data collected.

5.3 Demographic Characteristics of Participants

Respondents were fairly balanced in demographics, but not similar to the U.S.

Census Bureau report in 2010.122 African Americans were found to make up 13.6% of the

U.S. population, while Hispanics/Latinos made up 16.3%.122 These characteristics were not seen in the results of the study. Most respondents were Caucasian/white and between the ages of 18-44, which has been reported as a standard demographic characteristic for the Amazon Mechanical Turk population.111 99

Those who already registered as organ donors were more likely to be Caucasian females who are either married, single, or in a relationship. Women have been found to express less negative attitudes towards donation and have greater communication skills regarding topics of sensitive and personal nature.123,124 This has been demonstrated where female members of an Organ Procurement Organization (OPO), or health care provider, were more likely to engage families of brain-dead patients in conversations about organ donation with favorable outcomes.125 Various marital statuses (i.e. widowed, married, single, etc.) were similar between the two groups.

Education and income levels were balanced between both groups. These findings are similar to the 2012 Gallup Poll that reported demographic characteristics between donors and non-donors.37 Those with lower socioeconomic statuses (income, education, and occupation) have been found to have a lower likelihood of being organ donors.83,126

Asian Americans were found to have the largest association with being non- donors, based on a small sample size who identified with this ethnicity. This may be due to the differences in cultural beliefs in Asian American cultures when compared to

European American cultures. The importance of family members and attachment to the physical body of deceased loved ones can be a barrier towards becoming a donor, or granting permission to an OPO at the time of brain death.127 Additionally, Asian culture believes that the body of a deceased individual returns in the next life, and removing anything from their deceased body in this life would affect their happiness in the next 128.

These cultural factors have combined to create a negative attitude towards organ donation in Asian populations. Youth have often been looked to as a way to improve attitudes for

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organ donation and increase family discussions with the hopes to change attitudes in the

Asian culture.129

Another interesting finding was the frequencies of those who requested the link for more information about organ donation after completing the survey. Although the overwhelming majority declined the information, respondents who selected ‘yes’ were mostly those who had already registered as organ donors. It may be possible that these people who were already organ donors that requested the link were not aware of such information being available, and therefore were interested to learn more about what

DonateLife was and what information they had to offer.

Religiosity was not very common among donors or non-donors from AMT. Many respondents reported never attending religious meetings or spending time practicing private, spiritual activities (praying, meditating, etc.). The same could be said for whether respondents experienced the presence of the divine, if their religious beliefs shaped their approach to life, or if they applied their spiritual beliefs to their decisions, attitudes, and actions. The literature has often identified religious beliefs as a reason for why people may choose to donate or not. Faith and religion has been shown to encourage organ donation,81 while some have claimed that organ donation is an act of playing God and using it as a reason to not register 16. Most non-donors disagreed that organ donation was not appropriate from their religious perspective. These findings may indicate that religion does not play an important role in the decision to register as an organ donor for the AMT population.

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5.4 Applying the Integrated Behavioral Model

This study looked to apply the IBM to identify what predicts the intention of registering as an organ donor. As described previously, the IBM adds to both the Theory of Reasoned Action and Theory of Planned Behavior to create a stronger theory used in predicting a health behavior. Based on the findings of this study, for individuals who are contemplating the decision to register as an organ donor, they should:

1. Have a strong social support within their families (i.e. parents,

significant others) and be aware of their decision(s) regarding

registering as an organ donor

2. Had exposure to positive factors that allow them to see the importance

that organ donation has towards other individuals

3. Be aware of how to register as an organ donor and believe it is a

simple, easy process

4. Hold positive attitudes towards the act of registering as an organ donor

and its impact on others

5. Then have an increased likelihood of registering as an organ donor

The following sections will explain the findings for these five segments of the

IBM as it applies to the results of this study.

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5.4.1 Social Support and Awareness

Communication with referent others has been found to play a role in the intention to register as an organ donor.42 When compared to non-donors, donors had a significantly higher rate of agreement with all items measuring subjective and descriptive norms. This included agreeing that most people they knew were registered as organ donors, or that their parents, spouses/significant others, and friends were registered as donors. A positive relationship was also identified between perceived norms, attitudes, self-efficacy, and intention to register as an organ donor. If non-donors feel that those closest to them would want them to be an organ donor and are motivated to comply, they may have more positive attitudes towards registering, increased beliefs that they can complete the actions required for registering, and ultimately increase the likelihood of registering. This may be accomplished through increased communication about organ donation within the family.

Lacking awareness of one’s wishes has often been the reason why the wishes of those who register as organ donors are not honored.39 Regardless of an individual’s registration status/wishes, states have required OPO representatives to still obtain permission from a next of kin or family member in the event of brain-death.5,39 If families do not communicate wishes and discussions, these incidents can and do occur, emphasizing the importance of communication.

Most non-donors felt that they were certain that they could communicate their wishes to their loved ones and health care providers, although these communications have not been occurring. Those who were organ donors were much more frequently exposed to at least one conversation about it within the past six months than non-donors.

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The same was true for conversations with healthcare providers, although these conversations were less than the conversations with loved ones. It is possible that these conversations have occurred outside of the last six months, although many non-donors reported that they have not thought about or were undecided regarding their decision to register.

From these findings, it should be recommended that families engage in communication about organ donation and wishes. Engaging in communication about organ donation and wishes for registering can be difficult. By being aware of others who are registered and support it, it may be able to prompt discussions at a one-on-one level within the family that may progress towards a family-based discussion. Due to the sensitive nature of this topic, more research may be required on ways to better strengthen the family communication atmosphere.

5.4.2 Exposure to Positive Factors

The positive control ability had a positive correlation with the intent to register, as well as attitudes and self-efficacy. This indicates that increasing exposures to factors that make it easier for someone to register as an organ donor can increase the confidence they have in their ability to register, increase their attitudes about registering as a donor, as well as increase the likelihood that they will register. Non-donors felt that exposure to supportive messages through various media outlets, such as social media, TV shows and movies, or social media, had some effect in making it easier for them to register. These three were reported by both donors and non-donors to be the source of at least one media 104

message about organ donation and transplants that they had been exposed to in the past six months. Although there was some effect reported, most non-donors felt that exposure to messages on these, and other media outlets (books, movies, etc.) did not make it easier or harder for them to register as a donor.

Communicating with both health care providers and loved ones, however, were both reported more frequently as making it easier for them to register. This emphasizes the need for communication within the family, as discussed previously. It also emphasizes the need for increasing communications with health care providers about registering with those under their care.

Non-donors felt that hearing about someone they knew who really needed a transplant would make it easier for them to register. Having a personal connection towards an individual in need of something, such as a transplant, has shown to help encourage behaviors that can help that individual.130 An individual’s attitude towards registering as an organ donor may be changed if their experience has shown them the benefits it may have on the life of the individual they care for. Not everyone will have personal experiences with individuals that need transplants. It may be possible that non- donors who do not have these experiences could find them from those who have been a recipient of an organ transplant or their families.

Non-donors were given the opportunity to identify individuals who they felt may be best suited to educate others about registering to become an organ donor. One of the most frequently reported responses by this group included organ transplant recipients or their family members. Being unaware of the destination of a donated organ has been cited as a reason for why individuals chose to not become organ donors.40 Knowing someone 105

who was transplanted was also identified as a reason why families gave permission for organ donation.83 These responses may indicate that those who received an organ transplant may be in a unique position to provide education about the process and its impacts on their lives and those around them, creating a relationship with non-donors.

This may thus potentially increase their attitudes about registering, increasing their beliefs that they can complete the registration process, and therefore increase the likelihood that they will register as an organ donor. It is a concept, that to the best of the researcher’s knowledge, has not yet been fully explored in published literature.

5.4.3 Awareness of Registration Process

Most non-donors were certain that they could register as an organ donor and certain that they could complete various aspects of the process. This included finding the registration forms and completing them, having conversations with loved ones and their health care providers, and register at their next driver’s license or state ID renewal.

Although their certainty about the process of registering as an organ donor was not correlated with the likelihood of registering, it was found to have a positive correlation with positive attitudes, perceived norms, and positive control ability. Increasing a non- donor’s confidence in their ability to register can also increase these other factors, which can then increase the likelihood of registering. To increase the confidence of those who are undecided or have not thought about registering, education becomes a critical component.

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Education is important when it comes to an informed decision. Since most of those who were not organ donors indicated that they felt certain they could complete some of the various aspects of registering, education should be focused on two distinct factors: increasing attitudes and increasing communication with loved ones and healthcare providers. The latter of which has been previously discussed. This study has found that attitudes has a positive correlation to many of the constructs within the IBM, meaning that if they increase, attitudes are likely to increase as well. The correlation with positive attitudes and positive control ability was found to have the strongest correlation, meaning that exposure to some of these positive experiences about organ donation would have a greater relationship on their attitudes. As previously discussed, those who have received a transplant and/or their families may be in the best position to provide this information and should be looked to as a source of information for those uncertain about their choice to register. Those who have already registered as organ donors were also referenced by this group as individuals who are best suited.

Medical doctors, nurses, and patient/health educators were the most frequently believed to be the best health care professionals to provide this education. Pharmacists were the least likely to be chosen by either group. The lack of support for pharmacists as organ donation educators may be due to the younger age of this population. A large majority of respondents were between the ages of 18 – 44; an age range associated with fewer diseases and therefore minimal need for medications outside of perhaps birth control, over-the-counter items, or short-term medications such as pain medications or antibiotics131 With the lack of need for medications, interactions with pharmacists can be limited and therefore this population may not aware of the services that pharmacists offer. 107

Pharmacists have continued to push for recognition at the national level as a provider, since they are currently not recognized as one.132 They have continued to aim to increase awareness of what they can do and their value through various interventions in both public health and within their practice settings.30,32-34 Although the respondents in this population did not feel pharmacists were suited to be educators about organ donation, pharmacists may still serve as an untapped resource for organ donation education being one of the most accessible and trusted health care professionals.31 To strengthen the case for provider status, pharmacists should focus on continuing to increase their relationships and images with all people they interact with, and especially those who fall in the age range identified in this study as they may not be aware of any benefits that pharmacists can have to their health and wellness.

These findings suggest that transplant recipients/families and registered organ donors should be utilized with doctors, nurses, and patient/health educators to ultimately deliver an effective message about the ease of registering by providing a positive exposure to what organ donation does for those who are most affected by it.

5.4.4 Having Positive Attitudes Towards Registering and Intention to Register

Each of the previously described proposals from the IBM have a common connection: attitudes. There were observed differences between attitudes within the response from both groups. Donors were found to have significantly more supportive attitudes towards registering than non-donors, believing that it was a positive, fulfilling 108

experience that made them feel good. Non-donors held significantly more negative attitudes, believing that registering as a donor was scary and would make them feel uneasy and nervous.

Despite these negative attitudes about the action of registering, most non-donors believed that registering as an organ donor was a good and valuable action, providing them with a good way to help others and be an act of self-less charity. This helps to explain the disconnection between support and intention that was identified previously.37

Non-donors in this population may believe that registering is a good act, but hold enough negative attitudes, including fear, nervousness/feeling uncomfortable and bad about becoming a donor that it prevents the act of registering. Based on the results of the regression, these negative attitudes towards registering as an organ donor were the most significant predictor of the likelihood of registering. This was emphasized by the responses that most non-donors did not intent to register in the next six months.

Attitudes have been shown to be a major predictor of behaviors.133 This has been seen to be true in organ donation as well, where attitudes played a role within the decision to register as an organ donor.78,99,100 Results from this study show that attitudes are the major predictor for intention to register in this population, but it also showed that attitudes were positively related to several other constructs. Each of these constructs were described in the previous sections, because lacking any of them can have a direct impact on the attitudes they have about organ donation and therefore decreasing the likelihood of registering.

Non-donors may be held back from completing the action of registering due to the fear of death and dying. The overwhelming majority of non-donors felt that registering 109

would cause them to think about their death, reminding them that they will not live forever, and both outcomes were not favorable for them. Negative attitudes towards organ donation have been associated with the fear of death of the individual, which poses a challenge towards improving attitudes.134 Non-donors, especially minorities, often have a belief that medical professionals will not work as hard to save their life if they become a donor, which defers them from registering.28,29 Respondents in this study were more likely to disagree with this statement, but the lack of minorities may have affected these responses.

Changing the perception about death is a challenge, especially when most people at the time of registering as an organ donor are at a stage where thinking about death is not often done. Based on these findings, non-donors may be able to overcome their fears of death by having the strong social support, being exposed to positive experiences that make it easier for them to register, and being aware and educated regarding the registration process. The attitudes of those who are involved in this process to help must be supportive for organ donation and foster a comforting environment for non-donors.

This has been seen as a factor that can affect individual and family responses to registering or granting permission for organ donation.77,125,135 By providing these experiences and support to non-donors through trained individuals, it may be possible to improve attitudes about death and organ donation and potentially increase the number of registered donors.

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5.5 Recommendations for Individuals/Groups

Based on the findings of this study, several recommendations can be made to those involved in organ donation and transplantation. Physicians or surgeons who work with transplant patients should look to their patients as a potential source of information and education to non-donors. Exposure to those who have received transplants, who are waiting, or those who have donated their organs may be in a unique position to provide this education, improve the perceived behavioral control of non-donors, and strengthen their attitudes, which can increase the likelihood of them registering.

Physicians should look to partner with these individuals for education, and increase the frequency of discussions with their patients and family members in a proactive manner. Individuals who educate about organ donation must have positive, supporting attitudes towards registering as an organ donor and its benefits to provide a level of comfort for those who are non-donors. This comfort and social support may increase the likelihood of someone registering as a donor. A proactive approach towards registering now, and increasing the comfort of the idea of becoming a donor may ease an individual’s fears of death and dying. A reactive approach and asking at the time of death, although still important, should not be the main time when individuals or families are approached for organ donation.

Those involved in marketing/media should also seek to partner with consenting transplant recipients, their families, and/or donors to create powerful adds that increase perceived behavioral control and attitudes towards organ donation. TV shows/movies, social media, and newspapers/magazines appeared to be the most frequent sources of

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exposures to messages about organ donation. These messages should aim to provide comfort about organ donation and show its benefit, increasing attitudes towards registering. These ads should also aim to focus on assisting others involved in the education process by providing information and encouraging communication between family members and health care providers.

Policymakers should look to focus attention towards the registration process by creating educational programs through the United Network of Organ Sharing. These programs should focus on providing improved education on attitudes, social support, and positive facilitating factors that make it easier for non-donors to register. The programs could be used to help health care providers improve their attitudes about registering to be an organ donor, and communication skills towards non-donors and minorities. By improving these factors, non-donors may feel more at ease with their providers, increase the frequency of these conversations, and possibly have better outcomes for registering as an organ donor.

5.6 Limitations of the Study

This study has several limitations that the researchers acknowledge. The first limitation involves the initial survey design with elicitation interviews. Elicitation interviews conducted in a manner where responses are sought from the literature first and then used to guide the elicitation interviews is not a recognized method. It is instead recommended to use open-ended questions related to the construct being examined and allow respondents in the elicitation interviews to input their own thoughts to be used as 112

items in the survey.117 This may also relate to the reason why two additional IBM constructs arose during PCA and could not be loaded onto their parent construct. A small sample size of non-donors was used during the test-retest pilot phase, which may affect the results of the stability of the instrument reported from this analysis. Both elicitation interviews and test-retest for stability-reliability were convenience samples, which can also impact the instrument’

Another limitation is the sample selection for the study. The respondents from

Amazon Mechanical Turk were a convenience sample and are part of a very niched population of younger, computer-literate, white adults between 18 and 44 years of age.

Because of these characteristics, the generalizability of the results of this study are limited. It also limits applications to minorities, which are one of the largest groups of those who are not registered as organ donors when compared to Caucasians.

A third limitation was the small number of non-donors who participated in the survey. Donors and non-donors were a 65/35 split between the respondents in this study.

The presence of donors was successful in comparing the two populations and identifying differences that may explain what leads an individual to register as an organ donor.

However, the small number of non-donors may limit some of the statistical analyses performed in this study to explain relationships and prediction of intention.

A fourth limitation to this study is the lack of its ability to determine behavior and whether respondents register as organ donors. Since respondents cannot be tracked outside of the survey and questioned about their intention six months later, the assumption must be that high intention will yield high behavioral outcomes.

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The researchers attempted to control for as many biases as possible through the development and release of the survey. Social desirability may also be present where respondents may feel the need to answer positively and withholding true, negative attitudes. Having this survey administered online decreased face-to-face interactions, which is where social desirability bias is at its greatest.136 Although responses did not seem to skew towards any favorable direction, this bias may be limited but still present.

Responder fatigue is also a concern with the instrument length. However, most respondents completed the survey within an average of eight to nine minutes with the latter being for those who were not organ donors and took the full survey. This time is considered acceptable in research despite the length of the survey.137 The high compensation offered may introduce a bias of respondents that took the survey simply for the financial incentives offered, and the short response time window may have excluded potential candidates for the study that were unable to participate due to not being active on Amazon Mechanical Turk during the weekend the survey was offered. This also applies to the individuals who could have taken the survey, but were not members of

Amazon Mechanical Turk to participate.

5.7 Suggestions for Future Research

Organ donation is a complex behavior with many factors that play a role in one’s decision to register. Based on the results of this study, future research should look to examine more into the outcomes of various programs and marketing that seek to increase the attitudes of non-donors and whether they increase the rates of donor registration.

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Additional research should also examine other events/occurrences that would make it easier for them to register as a donor. Only one item out of nine was found in this survey to make it easier for a respondent to register as a donor, and there are potentials for more to exist. Attitudes may have been found to be the significant predictor towards registering, but its predictive power was not strong. This raises the question as to what else may be present that the survey instrument did not account for in the study. Some of constructs of the IBM that affect behavior, such as knowledge, salience, or environmental constraints may in fact be affecting the intention to register as an organ donor.

Future research should also consider relaunching this survey into larger and more varied populations outside of Amazon Mechanical Turk to examine any changes in the results. Considering the niche that Amazon Mechanical Turk represents, it is possible that the results of this study may change if they are repeated in different populations as the results are attempted to become more generalizable to the United States population.

Different results may indicate that what predicts and improves intention to register as an organ donor may be different across various groups, especially minorities.

In addition, research should also examine perceptions of the pharmacist as an educator for organ donation in other populations. With the limited exposure that these respondents have with a pharmacist, it may be possible that other groups of people have different perceptions. As pharmacists continue to push for provider status, increasing awareness of what they do within members of the public can strengthen their abilities to provide benefit and therefore provide support for claims that pharmacists will provide benefits to a variety of people if given provider status.

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References

1. Watson CJ, Dark JH. Organ transplantation: historical perspective and current practice. British journal of anaesthesia. 2012;108 Suppl 1:i29-42. 2. Ethics of Organ Transplantation. University of Minnesota; 2004:1-48. 3. Linden PK. History of solid organ transplantation and organ donation. Crit Care Clin. 2009;25(1):165-184, ix. 4. Talking About Transplantation: What Every Patient Needs to Know2013:1-39. 5. Caplan A. Organ Transplantation2008:129-132. Located at: From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns, New York. 6. HLA Typing/Matching. http://www.ucdmc.ucdavis.edu/transplant/learnabout/learn_hla_type_match.html. Accessed October 28, 2015. 7. HLA Matching and Graft Survival in Kidney Transplantation. Wolters Kluwer; 2015. http://www.uptodate.com/contents/hla-matching-and-graft-survival-in-kidney- transplantation?topicKey=NEPH%2F7355&elapsedTimeMs=1&source=machineLearning &searchTerm=hla+matching&selectedTitle=1~72&view=print&displayedView=full&anch or=H16468305#. 8. Paramesh AS. What's new in the transplant OR? AORN J. 2013;97(4):435-444; quiz 445- 437. 9. Terasaki PI. The History of HLA and Transplantation. Hirosaki Med J. 2013;64:45-52. 10. Tzvetanov I B-PL, Giulianotti PC, Jeon H, Garcia-Roca R, Bianco F, Oberholzer J, Benedetti E. State of the Art Robotic Surgery in Organ Transplantation. World J Surg. 2013;37:2791-2799. 11. Abouna GM. Organ Shortage Crisis: Problems and Possible Solutions. J Trans Proceed. 2008;40:34-38. 12. Brody JE. The Solvable Problem of Organ Shortages. The New York Times2007. 13. National Organ Transplant Act. 1984. 14. Organ Procurement and Transplantation Network (OPTN) Polcies. In: OPTN, ed2015:1- 223. 15. Modlin CS. Culture, race, and disparities in health care. Cleve Clin J Med. 2003;70(4):283, 287-288. 16. Irving MJ, Tong A, Jan S, et al. Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature. Nephrol Dial Transplant. 2012;27(6):2526-2533. 17. Organ Transplantation: The Process. http://www.organdonor.gov/about/transplantationprocess.html. Accessed January 3, 2016. 18. Murray CJLea. The State of U.S. Health, 1990-2010. Burden of Diseases, Injuries, and Risk Factors. J Am Med Assoc. 2013;310(6):591-606.

116

19. Quick B L LNR, Scott A M, Bosch D, Morgan S E. Perceptions About Organ Donation Among African American, Hispanic, and White High School Students. Qual Health Res. 2012;22(7):921-933. 20. DeVol R BA. An Unhealthy America: The Economic Burden of Chronic Disease. Milken Institute;2007. 21. Humphreys K. An organ shortage kills 30 Americans every day. Is it time to pay donors? The Washington Post. October 20, 2014, 2014. 22. Williams IT, Milton JD, Farrell JB, Graham NM. Interaction of socioeconomic status and provider practices as predictors of immunization coverage in Virginia children. Pediatrics. 1995;96(3 Pt 1):439-446. 23. Jiang K. The Ethics of Solving the Transplant Organ Shortage. 2014; http://sciencelife.uchospitals.edu/2014/02/18/the-ethics-of-solving-the-transplant- organ-shortage/. Accessed July 10, 2015. 24. Living Kidney Donor Follow-Up Conference Writing G, Leichtman A, Abecassis M, et al. Living kidney donor follow-up: state-of-the-art and future directions, conference summary and recommendations. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2011;11(12):2561-2568. 25. JC GEMJRDMJOMFJCPOCKC. Hispanic/Latino concerns about living kidney donation: a focus group study. Prog Transplant. 2014;24(2):152-162. 26. Morgan SEM, J.K. Beyond the Organ Donor Card: The Effect of Knowledge, Attitudes, and Values on Willingness to Communicate About Organ Donation to Family Members. Health Communication. 2001;14(1):121-134. 27. Callender CO, Miles PV. Minority organ donation: the power of an educated community. Journal of the American College of Surgeons. 2010;210(5):708-715, 715-707. 28. First MR. Controversies in Organ Donation: Minority Donation and Living Unrelated Donors. Transplantation proceedings. 1997;29:67-69. 29. Siminoff LA, Saunders Sturm CM. African-American reluctance to donate: beliefs and attitudes about organ donation and implications for policy. Kennedy Institute of Ethics journal. 2000;10(1):59-74. 30. Morrison CMG, D.; Gilchrist, S.M.; Casey, M.O.; Lanza, A.; Lane, R.I.; Patanian, M. . A Program Guide for Public Health: Partnering with Pharmacists in the Prevention and Control of Chronic Diseases. In: Promotion NCfCDPaH, ed. 31. Honesty/Ethics in Professions. 2016; www.gallup.com/poll/1654/honesty-ethics- professions.aspx, 2017. 32. Alloway RR, Dupuis R, Gabardi S, et al. Evolution of the role of the transplant pharmacist on the multidisciplinary transplant team. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2011;11(8):1576-1583. 33. Centers for M, Medicaid Services HHS. Medicare program; hospital conditions of participation: requirements for approval and re-approval of transplant centers to perform organ transplants. Final rule. Fed Regist. 2007;72(61):15197-15280. 34. Communities of Practice: Transplant Pharmacy Community of Practice (TXPHARM COP). Communities of Practice 2015; https://www.myast.org/communities- practice/txpharmcop, 2017.

117

35. Descourouez JL, Crowther B. Challenging pharmacists and pharmacy students to promote organ donation awareness. American journal of health-system pharmacy : AJHP : official journal of the American Society of Health-System Pharmacists. 2013;70(9):752-753. 36. Descourouez JL, Richards KR, Sam T, Crowther B. Expanding the role of pharmacists and pharmacy students in the promotion of organ donation awareness. Prog Transplant. 2014;24(2):189-191. 37. National Survey of Organ Donation Attitudes and Behaviors. In: Services USDoHaH, ed. Washington, D.C.: Gallup, Inc.; 2012. 38. Brown CV, Foulkrod KH, Dworaczyk S, et al. Barriers to obtaining family consent for potential organ donors. J Trauma. 2010;68(2):447-451. 39. Chon WJJ, M.A.; Gordon, E.J; Becker, Y.T.; Witkowski, P; Arwindekar, J.D.; Naik, A; Thistlewaite Jr, J. R.; Liao, C; Ross, L.F. When the Living and the Deceased Cannot Agree on Organ Donation: A Survey of US Organ Procurement Organizations (OPOs). American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2014;14:172-177. 40. Ghorbani F, Khoddami-Vishteh HR, Ghobadi O, Shafaghi S, Louyeh AR, Najafizadeh K. Causes of family refusal for organ donation. Transplantation proceedings. 2011;43(2):405-406. 41. Morgan SE, Harrison TR, Long SD, Afifi WA, Stephenson MT, Reichert T. Family discussions about organ donation: how the media influences opinions about donation decisions. Clinical transplantation. 2005;19(5):674-682. 42. Jeffres LC, JA; Amschlinger, J. Communication as a predictor of willingness to donate one's organs: an addition to the theory of reasoned action. Prog Transplant. 2008;18(4):257-262. 43. Glanz KR, B; Viswanth. Health Behavior: Theory, Research, and Practice. Fifth ed. San Francisco, CA: Jossey-Bass, A Wiley Brand; 2015. 44. Wohlwend JG, T.; Dake, J.; Jordan, T.; Khuder, S.; Kimmel, S. An examination of emergency contraception use by undergraduate college students in the Midwest using the integrated behavioural model. J Sex Educ. 2014;14(3):257-271. 45. Ernecoff NC, Keane CR, Albert SM. Health behavior change in advance care planning: an agent-based model. BMC public health. 2016;16:193. 46. Kucirka LM, Purnell TS, Segev DL. Improving Access to Kidney Transplantation: Referral Is Not Enough. Jama. 2015;314(6):565-567. 47. Rocheleau CA. Organ donation intentions and behaviors: application and extension of the theroy of planned behavior. J Appl Soc Psychol. 2013;43:201-213. 48. Rees MA, Bargnesi D, Samy K, Reece L. Altruistic donation through the Alliance for Paired Donation. Clin Transpl. 2009:235-246. 49. Qualifications. Being a Living Donor 2015; http://www.transplantliving.org/living- donation/being-a-living-donor/qualifications/. Accessed September 7, 2015. 50. Organ and Tissue Donation from Living Donors. Donate the Gift of Life organdonor.gov. Accessed September 7, 2015. 51. Organ Donation: The Process. Donate the Gift of Life http://organdonor.gov/about/organdonationprocess.html#process5. Accessed January 26, 2016.

118

52. Egede LE. Race, ethnicity, culture, and disparities in health care. Journal of general internal medicine. 2006;21(6):667-669. 53. Goila AK, Pawar M. The diagnosis of brain death. Indian J Crit Care Med. 2009;13(1):7- 11. 54. Frequently Asked Questions: Who Can Be a Donor? Donate the Gift of Life http://www.organdonor.gov/faqs.html. Accessed January 26, 2016. 55. Making the Decision Being a Living Donor http://www.transplantliving.org/living- donation/being-a-living-donor/making-the-decision/. Accessed February 4, 2016. 56. Klipa D, Mahmud N, Ahsan N. Antibody immunosuppressive therapy in solid organ transplant: Part II. MAbs. 2010;2(6):607-612. 57. Mahmud N, Klipa D, Ahsan N. Antibody immunosuppressive therapy in solid-organ transplant: Part I. MAbs. 2010;2(2):148-156. 58. Noncommunicable Diseases. 2014; http://www.who.int/topics/noncommunicable_diseases/en/. Accessed January 2, 2016. 59. Bonatti HJS, R; Sawyer, RG. Surgical Site Infections in Solid Organ Transplants. http://www.antimicrobe.org/final/t36.asp#t2. Accessed September 22, 2015. 60. Infection in the solid organ transplant recipient. Wolters Kluwer; 2015. Accessed October 28, 2015. 61. Pillai AA. Management of de novo malignancies after liver transplantation. Transplant Rev (Orlando). 2015;29(1):38-41. 62. Woolf SH, Aron LY. The US health disadvantage relative to other high-income countries: findings from a National Research Council/Institute of Medicine report. Jama. 2013;309(8):771-772. 63. Alden DLC, A.H.S. Organ Donation and Culture: A Comparison of Asian American and European American Beliefs, Attitudes, and Behaviors. J Soc Psychol. 2000;30(2):293-314. 64. Callendar CO, Hall LE, Yeager CL, Barber JB, Jr., Dunston GM, Pinn-Wiggins VW. Organ donation and blacks. A critical frontier. N Engl J Med. 1991;325(6):442-444. 65. Murray CJ, Kulkarni SC, Michaud C, et al. Eight Americas: investigating mortality disparities across races, counties, and race-counties in the United States. PLoS Med. 2006;3(9):e260. 66. Siegel JAEH, Z. "Can You Spare an Organ?": Exploring Hispanic Americans' Willingness to Discuss Living Organ Donation With Loved Ones. Health Commun. 2011;26:754-764. 67. Siegel JOB, E; Alvaro, E; Poulsen J. Barriers to Living Donation Among Low-Resource Hispanics. Qual Health Res. 2014;24(10):1360-1367. 68. Sieverdes JN, LS, Magwood, GS; Baliga, PK; Chavin, KD; et al. African American kideny transplant patients' perspectives on challenges in the living donation process. Prog Transplant. 2015;25(2):164-175. 69. Siminoff LA, Lawrence RH, Arnold RM. Comparison of black and white families' experiences and perceptions regarding organ donation requests. Critical care medicine. 2003;31(1):146-151. 70. Healthy People. 2013; http://www.cdc.gov/nchs/healthy_people.htm. Accessed December 21, 2015. 71. Braveman P, Egerter S, Williams DR. The social determinants of health: coming of age. Annu Rev Public Health. 2011;32:381-398. 72. Chronic Disease Overview. Chronic Disease Prevention and Health Promotion http://www.cdc.gov/chronicdisease/overview/. Accessed January 2, 2016.

119

73. Hashim F, Gregg JA, Dharnidharka VR. Efficacy of Extended Valganciclovir Prophylaxis in Preventing Cytomegalovirus Infection in Pediatric Kidney Transplantation. Open Urol Nephrol J. 2014;7(Suppl 2 M7):152-157. 74. Aldridge A, Guy BS. Deal breakers in the organ donation request process. Health Mark Q. 2008;23(4):17-31. 75. Dutta-Bergman MJ. A formative approach to strategic message targeting through soap operas: using selective processing theories. Health Commun. 2006;19(1):11-18. 76. Morgan SE, Harrison TR, Chewning L, Davis L, Dicorcia M. Entertainment (mis)education: the framing of organ donation in entertainment television. Health Commun. 2007;22(2):143-151. 77. Kosieradzki M, Jakubowska-Winecka A, Feliksiak M, et al. Attitude of healthcare professionals: a major limiting factor in organ donation from brain-dead donors. J Transplant. 2014;2014:296912. 78. Breitkopf CR. Attitudes, Beliefs and Behaviors Surrounding Organ Donation Among Hispanic Women. Curr Opin Organ Transplant. 2009;14(2):191-195. 79. Salim A, Berry C, Ley EJ, et al. The impact of race on organ donation rates in Southern California. Journal of the American College of Surgeons. 2010;211(5):596-600. 80. Modlin CS, Jr., Alster JM, Saad IR, et al. Renal transplantations in African Americans: a single-center experience of outcomes and innovations to improve access and results. Urology. 2014;84(1):68-76. 81. Siminoff LA, Gordon N, Hewlett J, Arnold RM. Factors influencing families' consent for donation of solid organs for transplantation. Jama. 2001;286(1):71-77. 82. Siminoff L, Mercer MB, Graham G, Burant C. The reasons families donate organs for transplantation: implications for policy and practice. J Trauma. 2007;62(4):969-978. 83. Frutos MA, Blanca MJ, Mansilla JJ, et al. Organ donation: a comparison of donating and nondonating families. Transplantation proceedings. 2005;37(3):1557-1559. 84. Siminoff LA, Arnold RM, Caplan AL, Virnig BA, Seltzer DL. Public policy governing organ and tissue procurement in the United States. Results from the National Organ and Tissue Procurement Study. Annals of internal medicine. 1995;123(1):10-17. 85. Moscovici S. Social Representations: Explorations in Social Psychology. Oxford, UK: Polity Press; 2000. 86. Horton RL. Marketing the concept of becoming a potential organ donor. J Health Care Mark. 1991;11(3):36-45. 87. Cohen SM, Kapsis, R.E. Participation of Blacks, Puerto Ricans, and Whites in Voluntary Associations: A Test of Current Theories. Soc Forces. 1978;56(4):1053-1071. 88. Siminoff LA, Arnold R. Increasing organ donation in the African-American community: altruism in the face of an untrustworthy system. Annals of internal medicine. 1999;130(7):607-609. 89. Morris C. A bitter pill: the Tuskegee syphilis experiment's effects on its subjects and decendents carries to this day, bearing relevance to minority and lower-income public health. Diverse Issues in Higher Education. 2016:10-13. Accessed May 12, 2016. 90. Loche JE QH, Shewchuk R, Mannon RB, Gaston R, Segev DL, Mannon EC, Martin MY. Identification of Stategies to Facilitate Organ Donation among African Americans using the Nominal Group Technique. Clin J Am Soc Nephrol. 2015;10(2):286-293.

120

91. Salim AL, E; Berry, C; Schulman, D; Navarro, S; Zheng, L; Chan, L. Effects of Community Educational Interventions on Rate of Organ Donation Among Hispanic Americans. J Am Med Assoc. 2014;149(9):899-902. 92. Babik JM, Chin-Hong P. Transplant tourism: understanding the risks. Curr Infect Dis Rep. 2015;17(4):473. 93. Martin D. Medical travel and the sale of human biological materials: Suggestion for ethical policy development. Global Social Policy. 2010;10(3):377-395. 94. Delmonico FL, Martin D, Dominguez-Gil B, et al. Living and deceased organ donation should be financially neutral acts. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2015;15(5):1187-1191. 95. Gaston RS, Danovitch GM, Epstein RA, Kahn JP, Matas AJ, Schnitzler MA. Limiting financial disincentives in live organ donation: a rational solution to the kidney shortage. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2006;6(11):2548- 2555. 96. Aaker JA, S. Why do people give? The role of identity in giving. J Consum Psychol. 2009;19:267-270. 97. Predicting Health Behaviour. 2nd Edition ed. Glasgow, U.K.: Bell & Brain; 2005. 98. Hyde MK, White, K.M. Testing an extended theory of planned behavior to predict young people's intentions to join a bone marrow donor registry. J Appl Soc Psychol. 2013;43:2462-2467. 99. Hyde MK, White, K.M. To Be a Donor or Not to Be? Applying an Extended Theroy of Planned Behavior to Predict Posthumous Organ Donation. J Appl Psychol. 2009;39(4):880-900. 100. Hyde MK, Knowles SR, White KM. Donating blood and organs: using an extended theory of planned behavior perspective to identify similarities and differences in individual motivations to donate. Health Educ Res. 2013;28(6):1092-1104. 101. Weinstein ND, Lyon JE, Sandman PM, Cuite CL. Experimental evidence for stages of health behavior change: the precaution adoption process model applied to home radon testing. Health Psychol. 1998;17(5):445-453. 102. Weinstein ND, Sandman PM. A model of the precaution adoption process: evidence from home radon testing. Health Psychol. 1992;11(3):170-180. 103. Sharp K, Thombs DL. A cluster analytic study of osteoprotective behavior in undergraduates. Am J Health Behav. 2003;27(4):364-372. 104. Hester CM, Born WK, Yeh HW, et al. Decisional stage distribution for colorectal cancer screening among diverse, low-income study participants. Health Educ Res. 2015;30(3):400-411. 105. Perez S, Tatar O, Shapiro GK, et al. Psychosocial determinants of parental human papillomavirus (HPV) vaccine decision-making for sons: Methodological challenges and initial results of a pan-Canadian longitudinal study. BMC public health. 2016;16(1):1223. 106. Northam HL. Hope for a peaceful death and organ donation: Faculty of Health, University of Canberra; 2015. 107. Raosoft Sample Size Calculator. http://www.raosoft.com/samplesize.html. 108. Schlesinger R. The Size of the U.S. and the World in 2016. 2016; http://www.usnews.com/opinion/blogs/robert-schlesinger/articles/2016-01-05/us-

121

population-in-2016-according-to-census-estimates-322-762-018. Accessed August 17, 2016. 109. Costello BAO. Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Practical Assessment Research & Evaluation. 2005;10(7). 110. Ajzen I. The theory of planned behaviour: reactions and reflections. Psychol Health. 2011;26(9):1113-1127. 111. Paolacci GC, J; Ipeirotis, P.G. Running experiments on Amazon Mechanical Turk. Judgement and Decision Making. 2010;5(5):411-419. 112. The Fry Graph Readability Formula. Readability Formulas http://www.readabilityformulas.com/fry-graph-readability-formula.php. Accessed April 5, 2017, 2017. 113. The SMOG Readability Formula. Readability Formulas http://www.readabilityformulas.com/smog-readability-formula.php. Accessed April 5, 2017, 2017. 114. Walsh TM, Volsko TA. Readability assessment of internet-based consumer health information. Respir Care. 2008;53(10):1310-1315. 115. Koenig HGBA. The Duke University Religion Index (DUREL): A Five-Item Measure for Use in Epidemological Studies. Rel. 2010(1):78-85. 116. Donate Life America. 2017; https://www.donatelife.net/. 117. Glanz KR, B; Viswanth. Health Behavior and Health Education: Theory, Research, and Practice. 4th ed. San Francisco, CA: Jossey-Bass; 2008. 118. Francis J, Eccles, M.P., Johnston, M., Walker, A.E., Grimshaw, J.M., Foy, R., Kramer, E.F.S., Smith, L., & Bonetti, D. Constructing questionnaires based on the theory of planned behaviour: A manual for health services researchers. 2004. 119. Parallel Analysis Engine to Aid Determining Number of Factors to Retain [computer program]. 2007. 120. Readability. 2016; http://www.clearlanguagegroup.com/readability/ Accessed April 15, 2017. 121. Sprouse J. A validation of Amazon Mechanical Turk for the collection of acceptability judgments in linguistic theory. Behav Res Methods. 2011;43(1):155-167. 122. Bureau USC. 2010 Census Data. 2013; https://www.census.gov/2010census/data/, 2017. 123. Quick BL, LaVoie NR, Reynolds-Tylus T, Bosch D, Morgan SE. Does Donor Status, Race, and Biological Sex Predict Organ Donor Registration Barriers? J Natl Med Assoc. 2016;108(3):140-146. 124. Sehgal NK, Scallan C, Sullivan C, et al. The Relationship Between Verified Organ Donor Designation and Patient Demographic and Medical Characteristics. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons. 2016;16(4):1294-1297. 125. Ebadat A, Brown CV, Ali S, et al. Improving organ donation rates by modifying the family approach process. J Trauma Acute Care Surg. 2014;76(6):1473-1475. 126. Axelrod DA, Dzebisashvili N, Schnitzler MA, et al. The interplay of socioeconomic status, distance to center, and interdonor service area travel on kidney transplant access and outcomes. Clin J Am Soc Nephrol. 2010;5(12):2276-2288.

122

127. Alden DL, Cheung AH. Organ donation and culture: a comparison of Asian American and European American beliefs, attitudes, and behaviors. J Appl Soc Psychol. 2000;30(2):293- 314. 128. Bowman KW, Richard SA. Culture, brain death, and transplantation. Prog Transplant. 2003;13(3):211-215; quiz 216-217. 129. Trompeta JA, Cooper BA, Ascher NL, Kools SM, Kennedy CM, Chen JL. Asian American adolescents' willingness to donate organs and engage in family discussion about organ donation and transplantation. Prog Transplant. 2012;22(1):33-40, 70. 130. Woodruff TK. The Ultimate Gift: Women and Organ Donation. 2013; https://www.woodrufflab.org/blog/ultimate-gift-women-and-organ-donation. Accessed April 24, 2017. 131. Health, United States, 2015: With Special Feature on Racial and Ethnic Health Disparities. In: Statistics NCfH, ed. Hyattsville, MD: National Center for Health Statistics; 2016. 132. APhA Adocacy Issues. 2017; http://www.pharmacist.com/apha-advocacy-issues. Accessed April 16, 2017. 133. Ajzen IF, M. The Influence of Attitudes on Behaviors. Mahwah, NJ: Lawrence Erlbaum Associaties. 134. Lester D. Organ donation and the fear of death. Psychological reports. 2005;96(3 Pt 1):769-770. 135. Baughn D, Auerbach SM, Siminoff LA. Roles of sex and ethnicity in procurement coordinator--family communication during the organ donation discussion. Prog Transplant. 2010;20(3):247-255. 136. Kaminska OF, T. Understanding Sources of Social Desirability Bias in Different Modes: Evidence from Eye-tracking. 2013;2013(04). 137. Choi BC, Pak AW. A catalog of biases in questionnaires. Prev Chronic Dis. 2005;2(1):A13.

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Appendix A

Elicitation Interview Form and Data

This appendix contains the information regarding the elicitation interview process conducted for this study. The first segment includes the handout used for the investigator to follow and guide the process. The tables following explain the outcomes of the elicitation interview. This process is described in Chapter 3.

Elicitation Interviews

Script: Hello, my name is Matt Jordan and I am conducting elicitation interviews to generate ideas from people about their thought process regarding organ donation. This information is completely anonymous and used strictly for the purpose of building a survey that will be appropriate for the research I am seeking to do. Thank you!

Main Prompt: You are at the DMV getting your license, and the person at the front counter asks you if you would like to register as an organ donor.

Regardless of your current registration status, if known, what comes to your mind when you are asked the following questions?

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Construct #1: Belief About Behaviors Question 1: What do you think or believe about registering to become an organ donor? Construct Count – Positive Position Count – Negative/Position 1) As a donor, I will receive the same care as I have been receiving. 2) Registering as an organ donor can save someone’s life. 3) I do not need my organs after death. 4) Donors are genuinely good, caring people 5) The media supports organ donation. 6) Healthcare professionals respect organ donors and their families and treat them as such. 7) I am aware of the benefits that being a donor can be for someone else. 8) People who are waiting for a donated organ are truly in need.

Comments:

Construct #2: Evaluation About Behaviors Question 2: Why do you believe that? Construct Count – Positive Position Count – Negative/Position 1) Receiving the same care will allow me to live a strong, healthy life.

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2) Saving someone’s life is one of the greatest things I can do.

3) Since I do not need functioning organs after death, giving them to someone in need feels right. 4) It is important to me to be thought of as a good, caring person. 5) I believe the person/message this media outlet is displaying. 6) It is important to be respected and treated as such by healthcare professionals. 7) Knowing how much this can benefit someone makes me want to register. 8) Helping people in need is a very good thing.

Comments:

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Constructs #3 &4: Opinions of Referent Others & Motivation to Comply Question 3: Do you think of anyone close to you when making this decision, and how they would want you to respond?

Question 4: AND how important are they in making the decision? Construct Yes No Very Important Indifferent Not that Not at all Important Important Important 1) My parents

2) My siblings

3) My spouse (if you have/had one)

4) My children (if I have/had them)

5) My friends/peers

6) My healthcare professionals that take care of me

7) My religion and/or religious leaders

8) Public figures/idols/mentors

Comments:

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Construct #5: Control Beliefs Question 5: When deciding to be a donor, do you feel that you are well-informed regarding the donation and future transplant processes? Construct Count – Positive Position Count – Negative/Position 1) I know how to become a donor.

2) I know how organ donation works.

3) I know who I can speak with regarding organ donation. 4) I know that there is a hospital near me that performs transplants that I can reach out to. 5) I know that how long I will live will not be altered by being an organ donor. 6) I know the benefits that being an organ donor can provide for someone else. 7) I know that there is a significant need for organ donors.

Comments:

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Construct #6: Perceived Level of Control Question 6: How important does being well-informed influence your decision of registration as an organ donor? Construct Count: Very Count – Not That Important/Important Important/Not That All Important 1) Knowing how to become a donor.

2) Knowing how organ donation works

3) Knowing who to speak with regarding organ donation. 4) Knowing a local/nearby hospital that does transplants 5) Knowing my life will not change or be worsened by this decision 6) Knowing the benefits 7) Knowing the need

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Table A.1: Responses Collected During Elicitation Interviews for Proposed Items Total (+) Total (-) Total Total 0 Item Responses Responses I will receive the same 14 1 15 6 care when I become a donor Registering as a donor can 21 0 21 0 save someone's life I do not need my organs 18 0 18 3 after death Donors are good, caring 13 1 14 7 people The media supports organ 6 9 15 6 donation Healthcare professionals 10 2 12 9 respect organ donors and their wishes I am aware of the benefits 19 0 19 2 being a donor has for someone else People waiting are truly in 19 0 19 2 need Receiving the same care 11 0 11 10 will allow me to live a strong, healthy life Saving someone's life is 18 1 19 2 one of the greatest things I can do I can give my organs away 20 0 20 1 after death if I do not need them It is important for me to 14 0 14 7 be thought of as a good, caring person I believe the 6 7 13 8 person/message this media outlet is displaying It is important to be 6 2 8 13 respected by my healthcare providers 130

Knowing how much this 19 0 19 2 will benefit someone makes me want to donate Helping people in need is 18 0 18 3 a very good thing 13 6 19 2 Considers parents 8 11 19 2 Considers siblings 10 8 18 3 Considers spouse 10 8 18 3 Considers children 7 11 18 3 Considers peers/friends Considers healthcare 7 11 18 3 professioanls' opinions Considers religious 4 12 16 5 leaders/religion Considers public 4 14 18 3 figures/idols/mentors I know how to become a 11 9 20 1 donor I know how organ 7 13 20 1 donation works I know who I can speak 9 10 19 2 with regarding organ donation I know there is a hospital 7 6 13 8 near me that perosm organ transplants that I can reach out to. I know how long I would 8 6 14 7 live is not altered by becoming a donor I know the benefits being 15 4 19 2 a donor can have for someone else I know there is a 14 4 18 3 significant need Knowing how to become 17 1 18 3 a donor is important

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Knowing how organ 17 1 18 3 donation works is important Knowing who to speak 13 1 14 7 with about organ donation is important Knowing a local/nearby 7 5 12 9 hospitals that perform organ transplants is important Knowing my lifespan is 15 1 16 5 not altered by becoming a donor is important Knowing the benefits is 19 0 19 2 important Knowing the need is 18 1 19 2 important

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Table A.2: Demographic variables regarding the 21 volunteer responders in the elicitation interviews. A key can be found below in Table A.3

Responder # Sex Race/Ethnicity Religious Pref. Education Level 1 M W UNK 3 2 F A CA 4 3 F W CH 3 4 F W CH 4 5 M A ATH 6 6 M W CA 6 7 F W UNK 1 8 M W BUD 3 9 F W AGN 2 10 F B CA 4 11 F W CA 2 12 F W CH 4 13 F W CA 6 14 M B ATH 3 15 F W ATH 2 16 F W CA 4 17 F W CH 3 18 M W AGN 3 19 F ME ISL 3 20 M W CH 6 21 F W CH 4

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Table A.3: Key Demographic Variables Collected During Elicitation Interviews

Races W White/Caucasian A Asian/Pacific Islander B Black/African American H Hispanic/Latino ME Middle Eastern AI Asian Indian IAN American Indian/Alaskan Nat

Sex M Male F Female

Religious Preference CH Christian CA Catholic HIN Hindu ISL Islam JEW Jewish BUD Buddhist AGN Agnostic ATH Athiest UNK Unknown

Education Level 1 Some High School 2 High School/GED 3 Some College/Associates Deg 4 College Bachelor's 5 Higher Education (Masters, PhD) 6 Professional Degree

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Table A.4: Additional Comments Provided During Elicitation Interviews

Registering is a painless process I did not know anything about this process until after I started going to medical school People giving out the info seemed Everyone should be an organ donor, it pressured to, not user friendly should be automatically opt-out versus opt-in I want to do it for others, not my parents Most people are not well-informed about what it is or why they should do it Metro Detroit has many good hospitals I would feel more obligated to register if I that make me feel comfortable about was more informed about the process registering and doing it The media preys off of those who are I think of others when I do this, but I do misinformed/uninformed not need to rely on others to make this decision Never an explained process, you have to More support is seen in shows like Grey’s seek this information out on your own Anatomy; they want to appeal to emotions My personal beliefs matter more over My dad believes that they won’t try as knowing the information when making hard to save his life if he would register this decision as an organ donor and face a medical emergency Generational knowledge gaps exist. Older I have no idea what my religion says generations are less likely to donate about becoming an organ donor because they just don’t know My decision is my own, I do not look to I have learned so much about organ others to help me make it donation because of so many doctors in my family. I would not be so supportive of it and encourage others as much as I do without the knowledge I have now My body would remain intact I am selfish towards myself, it is frightening to think someone can take my organs and use them My dad refused to be a donor because he The media is NEVER realistic in what does not want someone who abused their they are showing body to get his organs because of their choices

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Appendix B

Letter from Amazon Mechanical Turk Regarding Requirements for Participants

Your Amazon Mechanical Turk Inquiry 1 message

Amazon.com Fri, Mar 17, 2017 at 1:11 PM Reply-To: [email protected]

Hello Matt,

We are happy to assist with your research. The age requirement for a Worker is at least 18 years old. Workers can be from any location. Workers in general are able to complete as many HITs as they would like in week.

For a detailed information on our qualifications and policies concerning Workers I would direct you to our Participation

Agreement and our

worker FAQ below.

https://www.mturk.com

/mturk/conditionsofuse

https://www.mturk.com

/mturk/help?helpPage=

worker

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We are here to assist you so please let us know should you have any further questions or inquiries. Thank you for your inquiry. Did I solve your problem?

If yes, please click here: http://www.amazon.com/gp/help/survey?p=A1SRGN0NLPZ54E&k=hy

If no, please click here: http://www.amazon.com/gp/help/survey?p=A1SRGN0NLPZ54E&k=hn

Amazon Mechanical Turk

Please note: this e-mail was sent from an address that cannot accept incoming e-mail. To contact us again, select the Contact Us link related to your inquiry below.

Workers: https://www.mturk.com/mturk/contactus

Requesters: https://requester.mturk.com/contactus

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Appendix C

Face and Content Validity Experts

The following individuals were vital in assisting in establishing the face and content validity of the instrument. These individuals are:

1. Dr. Tavis J. Glassman – Associate Professor, University of Toledo, College of

Health Sciences

2. Dr. James Price – Professor Emeritus, University of Toledo

3. Dr. Melissa K. Hyde – Senior Research Fellow in Psych-Oncology and

Community Engagement, Menzies Health Institute Queensland, Griffith

University and Cancer Counsel, Queensland, Australia

4. Dr. Kimberly McBride – Assistant Professor, Director, Health Disparities

Research Collaborative, University of Toledo, School of Population Health

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Appendix D

Survey Instrument

Please Read These Instructions: This survey is about the decision that people make to register or to not register as an organ donor.

For your information, people can register to become an organ donor in three ways:

1. During Driver’s License Renewal: Select “YES” to organ donation when they apply for or renew their driver’s license. 2. Online: Register online with their state’s Organ Donor Registry. 3. Paper Copy of Card or Form: Sign a donor card or a paper copy of an organ donor form.

Now that you know about the registration process, let’s begin the survey.

SECTION A: Please answer the following general questions. Please select only one answer per question.

1. Are you over the age of 18? □ Yes □ No 2. Are you a U.S. Citizen or have you been a permanent U.S. resident for at least five years? □ Yes □ No 3. Are you able to read and understand the English language? □ Yes □ No 4. Have you registered to be an organ donor? □ Yes □ No □ Unsure 5. If you are not a registered organ donor, do you plan to do so in the next 12 months? □ Yes □ No □ Unsure

Instructions: This survey is about the decision to register to become an organ donor in the United States. Your answers will be kept private and confidential. Please answer each question honestly. Thank you!

6. If you HAVE NOT registered to be an organ donor or if you are UNSURE if you have, how likely is it that in the next 12 months that you will actually register? Please select the answer that best matches your intentions. 139

Very Neither Very Unlikely Unlikely or Likely Likely 1 2 3 4 5 6 7

7. Which of the following best describes your current status regarding the decision to register as an organ donor? (Select only one below)

a. I have never heard about registering to become an organ donor before. b. I have never really thought about registering to become an organ donor before. c. I am undecided about registering to become an organ donor. d. I have thought about it and decided that I do not want to register as an organ donor. e. I have decided to register as an organ donor but have not actually done so yet. f. I have already registered as an organ donor.

If you selected ‘Yes’ on #5, or ‘F’ on #8 above, skip to SECTION F

SECTION B: Please read the following questions carefully. For each item, select the answer (the number) that best matches your thoughts or feelings about registering to become an organ donor.

For me, registering as an organ donor would be . . . (Select only one answer for each)

Uncomfortable Comfortable 1 2 3 4 5 6 7

Unpleasant Pleasant 1 2 3 4 5 6 7

Bad Good 1 2 3 4 5 6 7

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Worthless Valuable 1 2 3 4 5 6 7

8. If you did decide to register as an organ donor, how likely is it that your decision would result in the following outcomes? Please indicate the likelihood of each potential outcome below if you were to register as an organ donor.

For me, registering Very Very Unlikel Unsure as an organ donor Likely would . . . y provide me with a good way to help 1 2 3 4 5 6 7 others. be an act of self-less 1 2 3 4 5 6 7 charity. probably cause me to think about my 1 2 3 4 5 6 7 death. probably cause me to talk about 1 2 3 4 5 6 7 donating my organs with my loved ones. probably remind me that I will not live 1 2 3 4 5 6 7 forever.

9. How important to you are each of the following outcomes? For each potential outcome listed below, please rate how important each one is to you.

How important is it Very Very Unimpor Unsure Import to you to . . . tant ant help others? 1 2 3 4 5 6 7 do acts of self-less 1 2 3 4 5 6 7 charity? think about your 1 2 3 4 5 6 7 death?

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talk to your loved ones about your decision to either 1 2 3 4 5 6 7 donate or not donate your organs? be reminded that you will not live 1 2 3 4 5 6 7 forever?

SECTION C: Below is a list of people that may or may not approve of you registering to become an organ donor. For each person listed below, please select the one answer that best matches your level of agreement. Please select the ‘Not Applicable, N/A’ choice if your parents are deceased or you do not have a spouse or significant other.

11. Please rate your level of agreement with each statement below.

The following Strongl Somew Does people would Somew Strongl y Disagr hat Not Not hat Agree y approve of me Disagr ee Disagre Sure Appl Agree Agree registering as an ee e y organ donor: My parents N/ A My spouse/significant N/A other My friends N/A My healthcare providers (doctor, N/A nurse practitioner, physician assistant)

12. When it comes to health-related decisions such as registering to become an organ donor, how likely is it that you actually do what other people think that you should do? For each person listed below, rate the likelihood that you would actually do what they think you should do regarding registering to become an organ donor. Please select the ‘Not Applicable, N/A’ choice if your parents are deceased or you do not have a spouse or significant other.

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Regarding registering to become an organ Somew Does donor, how likely Very Somew Unlikel hat Not Very Not Unlikel hat Likely is it that you y Unlikel Sure Likely Appl y Likely would do what the y y people below think that you should do? My parents N/ 1 2 3 4 5 6 7 A My spouse/significant 1 2 3 4 5 6 7 N/A other My friends 1 2 3 4 5 6 7 N/A My healthcare providers (doctor, N/A nurse practitioner, 1 2 3 4 5 6 7 physician assistant).

13. In general, most people that I know would approve of me registering as an organ donor.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

14. Most people that I know have already registered to be an organ donor.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

SECTION D: Please read the following statements and select the answer that best describes your beliefs regarding registering to become an organ donor. Please read each question carefully.

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15. How certain are you that you could register as an organ donor? (Select one answer)

Certain I Certain I Could Not Could 1 2 3 4 5 6 7

16. How certain are you that you could complete each task listed below? For each task below, select the answer that matches your level of certainty.

When it comes to registering as an Certain organ donor, how Not Certain I I Could Sure Could certain are you that NOT could do each of the following tasks? Find or locate the online forms to 1 2 3 4 5 6 7 become an organ donor? Fill out the online forms to become an 1 2 3 4 5 6 7 organ donor? Communicate your organ donation wishes to family 1 2 3 4 5 6 7 members to make sure your wishes are honored? Communicate your organ donation wishes to your physician/health 1 2 3 4 5 6 7 care provider to make sure your wishes are honored? Register to become an organ donor the next time you renew 1 2 3 4 5 6 7 your license or state ID card?

17. Registering as an organ donor would be . . .

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Difficult Easy 1 2 3 4 5 6 7

18. Below are things that may make it easier or more difficult for you to register as an organ donor. For each item below, please indicate what effect it would have on your decision to register.

Please indicate how Would each item below may Would Make it make it easier or No Make it Very Effect Very more difficult for Difficul Easy you to register as an t organ donor. Hearing a promotional message on the radio 1 2 3 4 5 6 7 about organ donation. Hearing about someone that you 1 2 3 4 5 6 7 know who really needs a transplant. Hearing or seeing a story about an organ transplant 1 2 3 4 5 6 7 procedure that went terribly wrong. Seeing a TV show that promoted organ 1 2 3 4 5 6 7 donation. Seeing a movie that promoted organ 1 2 3 4 5 6 7 donation. Seeing or hearing about the powerful or wealthy trying to bend the rules to get 1 2 3 4 5 6 7 organs ahead of those without power and wealth. Seeing something on social media that 1 2 3 4 5 6 7 promoted organ donation.

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Seeing or hearing about someone who 1 2 3 4 5 6 7 donated an organ while still living. Seeing or hearing something that makes you feel 1 2 3 4 5 6 7 uncomfortable about organ donation. Seeing an article in the newspaper or in a magazine that 1 2 3 4 5 6 7 promoted organ donation. Having a conversation with a doctor or other 1 2 3 4 5 6 7 healthcare provider about organ donation. Having a conversation with 1 2 3 4 5 6 7 loved ones about organ donation.

SECTION E: Please read the following statements and select the answer that best describes your level of agreement with that statement. Please read each question carefully.

19. Organ donation is a big business in which certain people in power make a lot of money.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

20. Those in charge of getting people to sign up to be an organ donor cannot be trusted.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

21. Doctors work harder to save patients who are NOT organ donors than they do patients who are organ donors. 146

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

22. In the hospital setting, organ donors receive poorer quality health care compared to people who are not organ donors.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

23. Donating organs is not appropriate from my religious perspective.

Strongly Strongly Disagree Agree 1 2 3 4 5 6 7

Resume here if you selected Yes for item #4 or ‘F’ for item # 6 on page one.

SECTION F: Both those who have registered to become an organ donor and those who have not registered should continue the survey here. Please rate your level of agreement with each statement below. Please select the one answer for each item that best matches your views. Thank you.

Strong Somew Somew Strong 24. For me, registering ly Disagr hat Not hat Agree ly Disagr ee Disagre Sure as an organ donor …. Agree Agree ee e was/would be a positive experience was/would be scary was/would be fulfilling made/would make me feel uneasy made/would make me feel good

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made/would make me nervous

SECTION G: Please read the following statements and select the answer that best describes your level of agreement with that statement. Please select the ‘Not Applicable, N/A’ choice if your parents are deceased or you do not have a spouse or significant other. Please read each question carefully.

25. Most people I know are registered organ donors.

Strongly Unsure Strongly Disagree Agree 1 2 3 4 5 6 7

26. My parents are registered as organ donors.

Strongly Unsure Strongly Not Disagree Agree Applicable 1 2 3 4 5 6 7 N/A

27. My spouse/significant other is registered as an organ donor.

Strongly Unsure Strongly Not Disagree Agree Applicable 1 2 3 4 5 6 7 N/A

28. My friends are registered as organ donors.

Strongly Unsure Strongly Disagree Agree 1 2 3 4 5 6 7

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SECTION H: For each type of media/message exposure below, please select the answer that best describes your level of exposure over the past 6 months.

29. Over the past 6 months, how many encounters/exposures have you None 1 to 3 4 to 6 More than 6 had with the following types of messages about organ donations or transplantations? Radio messages? TV shows or TV movies? Hollywood movies? Social media messages?

Newspaper or magazines articles? Books or electronic books?

Conversations with your doctor/health care provider? Conversations with loved ones?

SECTION I: Please read the following questions and select the answers that best match your opinions.

30. In your opinion, which experts below would probably be the most effective in educating the public on how to register as an organ donor? (Check all that apply) a. Nurses b. Nurse Practitioners c. Physician Assistants d. Doctors e. Pharmacists f. Medical Social Workers g. Medical Assistants h. Patient Educators/Health Educators 149

i. Community Health Workers j. Hospital Chaplains k. Other (please specify) ______

31. Do you believe that educating the public about how to register as an organ donor is an appropriate role for a pharmacist? a. Yes b. No c. Unsure

32. In general, do you think that people would be receptive to their pharmacist bringing up the topic of organ donation during a routine pharmacy visit? a. Yes b. No c. Unsure

SECTION J: Please read the following statements and select the appropriate answer that best describes your religious/spiritual views. Please read each question carefully.

33. How often do you attend church, mosque, temple, or other religious meetings?

Never Once a A few A few Once a More than year or times a times a week once a less year month week

34. How often do you spend time in private spiritual activities such as prayer, meditation, or reading sacred books?

Rarely or A few Once a Two or Daily More than Never times a Week more times once a day month a week

35. For each statement, please circle the best answer that describes your religious/spiritual beliefs.

Definite Tends Tends Definite Religious and Spiritual Beliefs ly not not to Unsure to be ly true true be true true of me

In my life, I experience the presence of the Divine (i.e. God, Allah, Jehovah, other gods) 150

My religious/spiritual beliefs help shape my whole approach to life I try hard to apply my spiritual and values to my decision, attitudes, and actions

SECTION K: The following questions are background information questions only. Your answers are private and confidential.

36. What is your age? ______

37. What gender do you most identify with? a. Male b. Female c. Transgender

38. What race/ethnicity do you most identify with? a. White/Caucasian b. Black/African American c. Hispanic/Latino d. American Indian/Alaskan Native e. Asian f. OTHER (Please Explain:______)

39. What is the highest level of education you have completed? a. Some High School b. High School/GED c. Some College/Associates Degree d. College Bachelor’s Degree e. Higher Educational Degree/Professional Degree (Masters, Ph.D., Pharm.D, M.D., etc.)

40. What is your annual GROSS (before taxes) household income? a. Less than $10,000 (less than $830/month) b. $10,000 - $19,000 ($830 - $1,600/month) c. $20,000 - $29,000 ($1,700 - $2,400/month) d. $30,000 - $39,000 ($2,500 - $3,250/month) e. $40,000 - $49,000 ($3,300 - $4,000/month) f. $50,000 - $59,000 ($4,100 - $4,900/month) g. $60,000 - $69,000 ($5,000 - $5,750/month) h. $70,000+ (more than $5,800/month)

41. What is your current marital status? 151

a. Married b. Divorced c. Widowed d. Separated e. Never married f. Member of an unmarried couple

42. Would you like to receive a web link so that you can register to become an organ donor? Yes No To access information about how to become a registered organ donor, please click here. (https://www.donatelife.net/) Only applicable to the online version Thank you for completing and submitting the survey. Your results have been submitted

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Appendix E

Institutional Review Board Approval and Informed Consent

ADULT RESEARCH - INFORMED CONSENT INFORMATION Factors That Motivate Registration as an Organ Donor

Principal Investigator: Dr. Sharrel Pinto, Associate Professor and Division Head of Health Outcomes and Socioeconomic Sciences, College of Pharmacy & Pharmaceutical Sciences; (419) 383-1906 Matthew Jordan, Pharm.D/M.S. Candidate 2017

Purpose: You are invited to participate in the research project entitled, Factors that Motivate Registration as an Organ Donor which is being conducted at the University of Toledo under the direction of Dr. Sharrel Pinto. The purpose of this study is to determine what drives people to register as organ donors and find differences between those who are organ donors, and those who are not.

Description of Procedures: This research survey will take place at your computer in any setting that you choose to take it in. You will be asked a series of questions online. These questions will ask you about your attitudes, opinions, and beliefs regarding the act of registering to become an organ donor. Your participation will take about 25 minutes and will occur in a single session. You will not be asked to retake this survey.

Potential Risks: There are minimal risks to participation in this study, including loss of confidentiality. Participating in the survey could make you anxious or upset, and if this does happen, you may discontinue the survey at any time.

Potential Benefits: The only direct benefit to you if you participate in this research may be that you will learn about how health behavior-based surveys are run and may learn more about registering to become an organ donor. Others may benefit by learning about the results of this research.

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Confidentiality: The researchers will make every effort to prevent anyone who is not on the research team from knowing that you provided this information, or what that information is. The data that is generated from you responding to the survey is kept anonymous and will not be linked to you in any way. Although we will make every effort to protect your confidentiality, there is a low risk that this might be breached.

Voluntary Participation: Your refusal to participate in this study will involve no penalty or loss of benefits to which you are otherwise entitled and will not affect your relationship with The University of Toledo or Amazon Mechanical Turk (AMT). In addition, you may discontinue participation at any time without any penalty or loss of benefits.

Contact Information: Before you decide to accept this invitation to take part in this study, you may ask any questions that you might have by emailing the contact email provided above. If you have any questions at any time before, during or after your participation, you should contact a member of the research team [Dr. Sharrel Pinto, (419) 383-1906] If you have questions beyond those answered by the research team or your rights as a research subject, please feel free to contact the IRB Chair at (419) 530- 2844.

THE UNIVERSITY OF TOLEDO SOCIAL, BEHAVIORAL & EDUCATIONAL INSTITUTIONAL REVIEW BOARD

The research project described in this consent has been reviewed and approved as EXEMPT by the University of Toledo SBE IRB SBE IRB #: 201751 Project Start Date: December 2, 2016

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Appendix F

Free Text Responses from Educator Question

Table F.1: Open responses provided by those who selected ‘Other’ when asked about who is the best provider of education to the public about registering to become an organ donor (n = 16).

Anyone who has registered as an organ People who have received organs donor DMV clerks People who have received organ donations DMV People who received organs Family members of those who have Rabbis received or need organs Media Regular people who do it and their reasons News reporters Schools One’s own heart Social media Organ recipients TV ads

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