Do new drivers equal new donors?

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Title:
Do new drivers equal new donors? an examination of factors influencing organ donation attitudes and behaviors in adolescents
Portion of title:
Examination of factors influencing organ donation attitudes and behaviors in adolescents
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viii, 97 leaves : ill. ; 29 cm.
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Sirois, Brian C., 1974-
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Tissue Donors   ( mesh )
Automobile Driving   ( mesh )
Health Knowledge, Attitudes, Practice   ( mesh )
Adolescent   ( mesh )
Adolescent Behavior   ( mesh )
Parents   ( mesh )
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Thesis:
Thesis (Ph. D.)--University of Florida, 2001.
Bibliography:
Includes bibliographical references (leaves 80-84).
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by Brian C. Sirois.
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Typescript.
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Vita.

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University of Florida
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DO NEW DRIVERS EQUAL NEW DONORS? AN EXAMINATION OF
FACTORS INFLUENCING ORGAN DONATION ATTITUDES AND BEHAVIORS
IN ADOLESCENTS

















By

BRIAN C. SIROIS


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


2001
















ACKNOWLEDGMENTS

This paper is dedicated to my family who provided me with both emotional and

practical support during my graduate education. I extend a heartfelt thank you to my dear

mother and brother, Pauline and Steven Sirois. My mother's courage to be an organ

donor and my brother's experience as a transplant recipient both have provided

inestimable inspiration for this study. Special thanks are also due to my father, Joseph

Sirois, who always taught me that working hard would allow me to reach my goals in life.

My classmates and labmates (in particular Guido Urizar, Laura Grande, and

Caroline Danda) also deserve special praise for their friendship and support during our

training together at the University of Florida. We have all grown together as young

professionals and as friends and I will always appreciate the academic and personal

contributions each of you has made to my life. Stephanie Marhefka deserves special

mention for her assistance in generating ideas for this study and for establishing the

groundwork for recruitment of participants. I would also like to thank my close "crew" of

friends outside of the department including Joey Apollo, Kelli Daves, Ty Harrison, Chris

James, Curt Johnson, Miles Patterson, Mark Quesnelle, Stuart Roberts, Fred Woods, and

Merry Ann Yurillo. You all helped me to achieve balance in my life and always

encouraged me to live up to my potential. I will always cherish our friendship and my

memories of our many good times together during my stay in Florida.









Finally, I wish to extend my sincerest appreciation to the esteemed members of

my doctoral committee, Dr. Cynthia Belar, Dr. Garret Evans, Dr. Eileen Fennell, and Dr.

James Jessup. Your respectful input and guidance truly has helped me to grow as a

psychologist. Special thanks and admiration are due to Dr. Samuel Sears who served as

my mentor for my entire graduate career. Your untiring enthusiasm, support, and

professionalism have provided a superb model to which I can aspire.
















TABLE OF CONTENTS

page

ACKNOWLEDGMENTS ..........................................................................

LIST OF TABLES.............................................................................. vi

ABSTRACT.........................................................................................vii

REVIEW OF LITERATURE......................................................................1

The Multidimensional Nature of Organ Donation......................................2
Moving from Attitude to Action................................................2
Factors Influencing Organ Donation Attitudes.................................3
The Role of Knowledge.............................................................5
Communicating Organ Donation Status.......................................7
The Effect of Efforts to Increase Donation..............................................9
The Need for Organ Donation Research with Adolescents...........................10
The Importance of Audience Segmentation..................................10
Why Adolescents?...............................................................11
Previous Research on Adolescents and Organ Donation.................. 14
The Role of Parents............................................................... 18
Summary of Rationale.......................................................... 20
Aims of the Current Study................................................................21
Hypotheses..................................................................................22

METHOD............................................................................. ..........23

Participants..................................................................................23
Measures....................................................................................24
Demographics Questionnaire...................................................24
Organ Donation Attitudes Questionnaire......................................27
Organ Donation Knowledge Questionnaire..................................27
Additional Organ Donation Research Questions............................28
Procedure .................................. ...... ....... ..... ...........................28









R E SU LT S .................................... ...... .................................................30

Prevalence of Organ Donor Card Signing and
Factors Influencing Donor Status.................................................. 30
Knowledge About Organ Donation.....................................................31
Organ Donation Attitudes................................................................ 35
Communication About Organ Donation...............................................39
Descriptive Discriminant Analyses.....................................................43
Analysis One MANOVA........................................................46
Analysis One Test for Multivariate Normality................................46
Analysis One Discriminant Function...........................................49
Analysis One Classification Results............................................49
Analysis One Profile Analysis..................................................51
A analysis Tw o.................................................................... .52
Analysis Two MANOVA.......................................................52
Analysis Two Test for Multivariate Normality...............................55
Analysis Two Discriminant Function........................................ 55
Analysis Two Classification Results............................................57
Analysis Two Profile Analysis...................................................58

DISCUSSION..................................................................... .............59

Adolescent Knowledge about Organ Donation........................................59
Organ Donation Attitudes in Adolescents..............................................60
Communications About Organ Donation..............................................62
The Commitment to Becoming an Organ Donor......................................64
Predicting Donor Status................................................................. 66
Study Strengths and Significance........................................................71
Study Limitations................................................................ ....73
Future Directions for Organ Donation Research with Adolescents ................76

REFERENCES.....................................................................................80

APPENDIX A...................................................................... ...........85

A PPEN D IX B ................................................................................... ...86

APPENDIX C....................................................................................90

APPENDIX D..................................................................... ..........92

APPENDIX E....................................................................................94

BIOGRAPHICAL SKETCH.....................................................................97
















LIST OF TABLES


Table page

1 Demographic Characteristics of Participants .........................................25

2 Means and Standard Deviations for Percentage Correct
on the Organ Donation Knowledge Questionnaire.................................33

3 Organ Donation Attitude Questionnaire Means and
Standard Deviations by Donor Status and Parent vs. Adolescent Status............37

4 Parent and Adolescent Responses to Questions
Regarding Who Discussed Their Organ Donation Status.............................41

5 Sources of Information about Organ Donation........................................44

6 Discriminant Analysis Group Means for Adolescent Donors
and Nondonors on Organ Donation Attitudes, Knowledge
and Frequency of Communication......................................................47

7 Discriminant Analysis MANOVA Results.............................................48

8 Discriminant Loadings and Standardized Canonical
Discriminant Function Coefficients For Analysis
One Ordered by Importance of Loading.................................................50

9 Second Discriminant Analysis Group Means for
Adolescent Donors and Nondonors on Organ Donation
Attitudes, Knowledge, and Frequency and Nature of Communication ...........53

10 Second Discriminant Analysis MANOVA Results...................................54

11 Discriminant Loadings and Standardized Canonical
Discriminant Function Coefficients For Analysis
Two Ordered by Importance of Loading...............................................56
















Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

DO NEW DRIVERS EQUAL NEW DONORS? AN EXAMINATION OF
FACTORS INFLUENCING ORGAN DONATION ATTITUDES AND BEHAVIORS
IN ADOLESCENTS

By

Brian C. Sirois

August 2001

Chairperson: Samuel F. Sears, Jr., Ph.D.
Major Department: Clinical and Health Psychology

The present study had two primary purposes: 1) to obtain descriptive data about

adolescent organ donation attitudes, knowledge, communications, and donor card signing

rates and 2) to use discriminant analysis to determine the ability of adolescent and parent

organ donation attitudes, knowledge, and communication patterns to predict adolescent

donor status as well as to develop a profile of the adolescent donor versus the adolescent

nondonor. A community sample of 137 parent-adolescent dyads recruited at the local

Department of Motor Vehicles (DMV) Office of Driver Licenses completed the survey.

Results indicated that on average, adolescent and parent participants had

moderately positive attitudes toward organ donation and held few negative attitudes.

Parent knowledge was greater than adolescent knowledge, but both groups were scored

more than 50% correct on the knowledge questionnaire. Adolescent-parent









communications about organ donation were rated to be low in frequency, occurring on

average only once, but were rated as being generally positive in nature. Discriminant

analysis results indicated that the attitude, knowledge, and communication variables were

able to adequately classify adolescents as donors or nondonors, although knowledge had a

minimal influence on group classification. When all participants were included,

adolescent positive attitudes toward donation was the most powerful variable

discriminating between donors and nondonors. Using only participants who had

discussed donation with parents, the nature of parent-adolescent discussions about organ

donation became the most important variable in donor classification. Adolescent donors

reported significantly more positive and less negative attitudes, had parents with more

positive and less negative attitudes, and had engaged in more frequent and more positive

communications with parents about organ donation. Results also revealed specific

barriers to adolescent organ donation, including lack of knowledge regarding brain death,

DMV request procedures, and parental consent requirements.
















REVIEW OF LITERATURE

Organ transplantation has become the treatment of choice for a variety of end

stage chronic illnesses such as heart, liver, kidney, and lung disease (Dew et al., 1998).

The clinical success of organ transplantation has created an enormous demand by patients

for donor organs by offering a chance at greater longevity and improved quality of life.

This rapidly growing demand for donor organs continually has outpaced the supply of

available donors. The United Network for Organ Sharing (UNOS) reports that, by the

end of 1997, 56,678 patients were on the waiting list for a donor organ, and 4,447 patients

had died during the year while waiting for an organ to become available for

transplantation (UNOS, 1998). In the future, even greater disparity is expected between

the number of patients seeking organs and the number of organs available through

donation. (Birkimer et al., 1994).

As a result of the shortage of donor organs, many institutions have been involved

in the effort to increase organ donation. Psychologists are among the health professionals

viewed as being poised to offer their expertise in addressing problems in organ donation.

Specifically, psychology has been called upon to apply knowledge and theories of human

behavior, as well as research techniques, to developing a better understanding of factors

influencing people's willingness to become donors (Perkins, 1987). According to Perkins

(1987) psychologists have unique skills that may be used to aid in increasing public

awareness about organ donation, increasing donor card signing, and improving the









effectiveness of donation consent requests made to next of kin by various hospital

personnel. Psychological studies examining the attributes of individuals and families

who become donors could have a potentially positive influence on organ donation.

Despite encouragement to work in the area of organ donation from individuals such as the

Surgeon General, (Horton & Horton, 1991), only a relatively small body of psychological

literature has been accumulated to date. The current study will extend knowledge about

factors influencing organ donation and provide information on the process by which the

important but understudied adolescent population decide to become donors.


The Multidimensional Nature of Organ Donation

Moving from Attitude to Action

Research that has been conducted on factors influencing cadaveric organ donation

reveals that the decision to become an organ donor is a multifaceted process which may

require several steps: 1) individuals must become aware of organ donation, 2) gain

knowledge about the donation process, 3) form attitudes regarding donation, 4) determine

their willingness to become a donor, 5) sign a donor card, and 6) finally communicate

with family members about their decision to become an organ donor. Unfortunately,

generally positive attitudes held about donation appear to be distilled in the various steps

between learning about organ donation and actually engaging in the behavior of

becoming an organ donor. Despite very positive attitudes held by approximately 90% of

the U.S. general public toward the concept of organ donation (Gallup, 1993), very few

individuals actually become organ donors. In a review of research examining

psychological aspects of organ donation, Redecki and Jaccard (1997) report that only









28% of people were found actually to have signed a donor card although 85% reported

that they were supportive of the concept. These statistics are supported by other research

revealing that 98% of the individuals surveyed had heard about organ donation, yet only

14% had signed an organ donor card (Harris, Jasper, Lee & Miller, 1991). Gibson (1996)

reports that the disparity between support for the idea of organ donation and actual donor

card signing is a problem around the world. In the United Kingdom, 71% of individuals

surveyed reported favorable attitudes toward organ donation, yet only 23% carried a

donor card. The disparity between organ donation support and card signing is even more

pronounced in Holland and Germany where 99% of those surveyed in each country

reported favorable attitudes toward donation, but only 9% and 2%, respectively, had

signed an organ donor card.

Factors Influencing Organ Donation Attitudes

Few individuals actually become organ donors despite the high level of awareness

and positive attitudes toward the concept of organ donation. What factors might be

preventing people from transferring these positive attitudes into action? Several

researchers (Radecki & Jaccard, 1997; Parisi & Katz, 1986) examined variables that

might influence the translation of favorable donation attitudes into actual donation

behaviors. Findings suggest that attitude formation is not a simple process because of the

possible existence of competing attitudes formed in different ways. Positive attitudes

toward donation may not lead to donor card signing because of equally powerful negative

attitudes toward donation.

Specifically, in designing a scale to measure organ donation attitudes, Parisi and

Katz (1986) challenge the idea that attitudes are on a continuous scale ranging from









negative to positive. Instead, they assert that positive and negative attitudes may be

aroused separately. Thus an individual is not seen as being at one pole versus the other on

a bipolar continuum, but as having differing levels of positive and negative attitudes

which may be caused by varying factors. Parisi and Katz (1986) administered an organ

donation attitude scale to 110 adults. In assessing the measure, two reliable, independent

dimensions, pro-donation and anti-donation, emerged with only a nonsignificant

correlation of r = .003 between these two dimensions. Cluster analysis revealed that the

positive dimension was related to beliefs in the humanitarian benefit of being a donor and

feelings of pride felt by the donor. The negative dimension was defined by items tapping

fears of body mutilation and inadequate medical care. Participant attitudes significantly

predicted willingness to become a donor. Individuals holding strong positive and weak

negative attitudes were the most likely to donate. However, when participants had highly

negative attitudes toward donation, high positive attitudes did not increase commitment

to becoming an organ donor.

While the balance between positive and negative attitudes about donation may

play a role in predicting actual donor card signing behavior, many factors beyond those

studied by Parisi and Katz (1986) were found to influence the formation and valence of

organ donation attitudes. A literature review performed by Radecki and Jaccard (1997)

proposes that the available research on organ donation suggests a predictive model in

which religious beliefs, cultural beliefs, knowledge about donation/transplantation,

normative beliefs, and altruism influence attitudes toward organ donation. In turn,

attitudes about donation predict willingness to become a donor which predicts actual

donor behavior. Thus, while people may be well aware of organ donation and its









benefits, they may be of a religious or cultural background which does not approve of

donation or have relationships with significant others who hold negative views about

donation. Such influences are likely to influence donation attitudes and behaviors.

The Role of Knowledge

The influence of knowledge about the organ procurement system and organ

transplant process is a particularly salient variable. Knowledge has a strong influence on

attitudes held about donation and accounts for considerable variance in actual willingness

to become an organ donor (Rubens, Oleckno, & Ciesla, 1998; Kopfman & Smith, 1996;

Horton & Horton, 1991, 1990). Radecki and Jaccard (1997) suggest that misinformation

or a lack of knowledge about organ donation often leads to unfounded fears about the

donation process which prevents people from becoming organ donors. According to

Sanner (1994), 64% of individuals who were undecided about becoming organ donors

made a decision to become an organ donor when mistaken beliefs were corrected. Yuen

et al. (1998) report that minority groups are less likely to become organ donors because of

having less knowledge about organ donation and the donor card process.

The link between knowledge and organ donation attitudes and behavior has been

demonstrated clearly in the literature. Horton and Horton (1990) found a correlation of

r = .60 between knowledge about organ donation and organ donation attitudes. More

specifically, Horton & Horton (1990) found that greater knowledge regarding the organ

donation process, along with personal values, led to more positive attitudes about

donation, which in turn increased willingness to sign a donor card and actual card signing

behavior. In designing an organ donation knowledge questionnaire, Horton and Horton

(1990) also analyzed which knowledge questions were answered incorrectly by most









individuals to determine if specific pieces of misinformation about donation were barriers

to becoming a donor. They report that misinformation about brain death, religious

support for organ donation, the ethics of a physician treating both organ donor and

recipient, and the organ donor card process were significant barriers to willingness to

donate one's organs. In testing a similar model of organ donation attitudes, knowledge,

and behaviors, Kopfman and Smith (1996) found that organ donor card signing was

associated with higher levels of knowledge about donation. Those with more limited or

inaccurate knowledge tended not to become organ donors.

Knowledge-related barriers to donation often revolve around misconceptions

about what happens to the potential organ donor in a medical crisis. In particular, many

people appear to hold incorrect information about the concept of brain death and whether

this means that a person is truly dead before organs can be removed (Radecki & Jaccard,

1997). Research by Franz et al., 1997 indicates that, compared to donors, a significantly

greater proportion of nondonors failed to understand the concept of brain death and 37%

of the general public surveyed was unsure about the possibility of recovery after brain

death. Many people do not understand the concept of brain death even after it is

explained. Those who fail to understand it are less likely to consent to donation as they

often believe that there is a chance for recovery (Franz et al., 1997; Jasper, Harris, Lee &

Miller, 1991; Gibson, 1996; Riether & Mahler, 1995). Furthermore, understanding brain

death was found to be one of 3 predictors of the next of kin's future comfort with past

donation consent decisions (Burroughs et al., 1998).

Horton & Horton (1991) reveal that another major fear and misperception held by

people considering organ donation is that dying individuals who are known to be donors









might experience premature stoppage of medical services so that their organs can be

obtained for transplantation. Such misperceptions can lead to unfounded fears about

body mutilation and inadequate medical care and can therefore cause unfavorable

attitudes toward donating organs. Thus, adequate and correct knowledge about the

donation and transplant process appears to have a considerable influence on attitudes

about donation. In fact, informational messages that refute commonly held

misconceptions about organ donation increased willingness to become a donor (Ford &

Smith, 1991). Horton & Horton (1990) note that clarifying misconceptions about

negative consequences of being a potential donor would decrease fears and negative

attitudes about donation and should be a goal of programs designed to increase donor

card signing.

Communicating Organ Donation Status

In examining the multistage process of becoming an organ donor, much effort has

been given to understanding individual attributes, such as knowledge and attitudes, that

predict organ donation. On a more interpersonal level, failure to communicate one's

donor status may also contribute to the disparity between the number of people who

support donation and the number of organs that are actually donated. Donor card signers

may never actually become donors because of a failure to express their intentions to next

of kin who are usually called on to make the final decision regarding organ procurement.

Only 50% of those wishing to donate their organs were found to have discussed

these desires with important family members and only 33% of family members were able

to identify the desires of their next of kin in terms of organ donation. This issue is

especially problematic as research reveals that when the wishes of the deceased to donate









are known, rates of donation by families are as high as 98% versus less than 50% when

the desire to donate is unknown. In addition, next of kin attitudes about donation, which

may differ from the attitudes of the potential donor, have been found to influence

procurement decisions primarily when the attitudes of the deceased possible donor are

unknown (Radecki & Jaccard, 1997; Harris, Jasper, Lee, & Miller, 1991; Jasper, Harris,

Lee, & Miller, 1991; Harris, Jasper, Shanteau, & Smith, 1990). Family refusal to consent

to donation has been identified by organ procurement organizations as the most

frequently occurring cause for the loss of potential donor organs (Weiss, 1996). Because

families often make the final decision about donating a loved one's organs, the most

important aspect of educating the public about organ donation may be to promote family

discussion about donation (Alleman, Coolican, Savaria, Swanson, & Townsend, 1996).

Given that family consent to donation plays such an important role in determining

whether the organs of potential donors are actually procured, researchers have not only

emphasized the importance of increasing communications between the individual

deciding to become an organ donor and his or her family, but also between the family and

those in charge of making donation consent requests. While family knowledge of the

next of kin's wishes was mentioned previously as having an influence on the family's

consent, factors such as making a request for donation at an appropriate time and in a

sensitive manner, and educating hospital staff about donation and how to make donation

requests, also have been shown to influence consent rates (Beasley, Capossela, Brigham,

Gunderson, Weber, & Gortmaker, 1997; Holtkamp, 1997; Niles & Mattice, 1996;

Randall & Markwick, 1991).









The Effect of Efforts to Increase Donation

Statistics available on donation rates suggest that research efforts and donation

campaigns in recent years may have had some influence on the number of organ donors.

UNOS (1998) reports that the number of cadaveric and living donors increased by 57%

between 1988 and 1997. The increase was especially pronounced among living donors,

the number of which more than doubled from 1,824 donors in 1988 to 3,793 in 1997. In

contrast, cadaveric donors increased only 34% (from 4,080 to 5,475) during the same

time period. Interestingly, UNOS reports that the increase in donors was due primarily to

the increase among donors age 50 and older. Cadaveric donors over 50 years of age

increased from 12% in 1988 to 28% in 1997, while donors in the 18-34 age group

decreased from 41% of donors in 1988 to 27% of donors in 1997. Among living donors,

those in the 18-34 age group decreased from 48% in 1988 to 38% in 1997, while donors

35 and older increased from 52% to 61% in the same time period. Donations from those

age 11-17 dropped from 15% to 11%. The reasons for the drop in donors under the age

of 35 in unknown, although statistics from a national sample show that younger

individuals are less likely to carry an organ donation card, but reasons for this trend are

also unclear (Manninen & Evans, 1985). It is possible that campaigns to increase

donation are differentially effective with different age cohorts, that different barriers may

be present for different age groups, or that attitudes regarding donation and death may

change as people age.









The Need for Organ Donation Research with Adolescents

The Importance of Audience Segmentation

UNOS data suggest that more organ donation research and interventions should be

done with younger populations. Smith and Braslow (1997) assert that much work has

been done to better understand the donation attitudes of the general public and to

encourage donation in this broader group. They argue that specific segments of the

population (such as younger individuals, who may be less supportive or who have not

been targeted previously), should now be the focus of donation research and campaigns.

While organ donation research has included younger individuals (typically college

students), little research has been done on the organ donation attitudes of younger

adolescents such as those between the age of 15 and 16 seeking their driver's license.

Furthermore, the results of research including 17 and 18 year olds often have been

combined with information on individuals from all other ages. By combining age groups,

any age effects which might exist are obscured and the attitudes held by this larger group

may not reflect those held specifically by younger individuals.

Kopfman and Smith (1996) highlight the need for organ donation research

targeted at understanding specific populations, such as adolescents, for the development

of specially tailored programs to increase donation. They assert that audience analysis

and segmentation is critical in order to successfully design campaigns to increase organ

donation. This step allows for an understanding of the psychological profiles of different

members of a target audience so that communications can be specifically tailored to meet

the needs of these varying groups of individuals. By isolating the particular needs of

specific audiences, maximally effective messages can be developed to persuade different









segments of the population to become donors, rather than using more general messages

that may not be equally effective across varying populations. Tailoring messages also

increases the probability that audience members will attend to the message and will adopt

recommendations within the message.

Kopfman and Smith (1996) provide an example of audience segmentation by

using discriminant analysis to determine how varying levels of organ donation

knowledge, attitudes, altruism, fears, and subjective norms can be used to predict whether

individuals do or do not become organ donors. The variables used were found to account

for 60% of the variance in donor behavior and to accurately categorize 67% of

participants as either donors, individuals with high intent to donate, or individuals with

low intent to donate. Analysis of the predictor variables revealed that those with low

intent to become organ donors had less knowledge about donation, were less altruistic,

and felt that signing a donor card would be a frightening experience. By understanding

the dynamics of this group and the specific barriers preventing organ donation card

signing, more effective campaigns can be developed to help increase the number of

donors.

Why Adolescents?

An initial search for previous studies revealed that, to date, no research examining

the organ donation attitudes and behaviors of adolescents seeking their drivers license has

been carried out. This is surprising for several reasons. First, given that the majority of

potential donors tend to be young individuals who are involved in sudden and violent

trauma, the need for work aimed at increasing this population's willingness to donate

seems especially warranted (Holtkamp, 1997; Lange, 1992). New adolescent drivers may









comprise the largest potential pool of organ donors as this group is the most likely to

experience accidental death. Sixteen-year-olds have the highest fatality rate for motor

vehicle accidents and these accidents are the largest health problem for 16-19 year olds

accounting for one third of all deaths in this age group in the United States (Williams,

1998; 1985). Thus, analysis of factors affecting adolescent donation behaviors could lead

to the development of more effective appeals for adolescents to become donors and

potentially could increase the number of organs procured from this population.

A second reason for studying the donation attitudes of adolescents seeking their

license is one of utility. Many Americans of driving age seek out and carry a driver's

license. In 1993, nearly 130 million Americans age 16 and over had a driver's license.

All fifty states and the District of Columbia now have some method for stating donation

intentions on the driver's license. Thus, obtaining a drivers' license may be the first, and

perhaps the only time that an individual is faced with making a decision about becoming

an organ donor as it is the one of the few standard points at which people are asked to

determine their organ donation intentions. No other donor card signing request system

appears to be as wide-reaching. Motor vehicle agencies are one of the few institutions in

the U.S. that have this type of routine contact with such a high proportion of adolescent

individuals. Since most adolescents have contact with motor vehicle agencies, and the

topic of organ donation is already a component of obtaining a driver's license, the

potential for organ donation research and interventions with this population is promising.

A third reason for studying adolescents seeking their driver's license is that initial

decisions to donate are influenced more by social factors, rather than by internal factors.

As a result, adolescents receiving their licenses may be a particularly receptive group for









donation campaigns (Cacioppo & Gardener, 1993). Understanding the foundations of

adolescent attitudes toward donation (that is, whether attitudes are based on parental

attitudes, perceived social norms, or other factorsa0, and developing specially tailored

programs to instill more informed and positive viewpoints could lead to lifelong

commitments to remain a donor. Over time, such attitudes might be shared with family,

friends, significant others, or even one's children and thus might influence the formation

of positive donation attitudes and donation behaviors in others.

A fourth rationale for examining the factors influencing organ donation attitudes

and behaviors of adolescents relates to health care policy issues. Growing attention has

been paid to adolescents' abilities to make independent decisions about health care as the

interests and values of the adolescent may differ from those of parents who typically are

afforded the privilege of making health care decisions for their teenage children

(McCabe, Rushton, Glover, Murray & Leikin, 1996). Several states have passed laws

allowing for adolescent autonomy in consenting to psychiatric care, treatment for sexually

transmitted diseases, reproductive care, substance use treatment, and even behavioral

research. These actions provoke the question of whether adolescents have the ability to

consent to becoming organ donors without parental approval. If parental influences are a

barrier to adolescents agreeing to become donors, then allowing for an autonomous

decision could lead to higher card signing rates in the adolescent population, and

potentially to increases in organs available for transplantation. While allowing for such

autonomy might prevent communication about organ donation status among family

members, communication with family could be promoted. Research has demonstrated

that the wishes of the next of kin are typically honored when known, even in cases where









family members consenting to organ procurement do not hold positive attitudes toward

organ donation (Harris, Jasper, Lee, & Miller, 1991).

Previous Research on Adolescents and Organ Donation

Only a few available studies have examined aspects of adolescents' orientation

toward organ donation. Bernstein and Simmons (1974) studied 26 potential and actual

kidney donors between 16 and 20 years old and found that adolescent donors were more

likely than adult donors to experience a boost in self-esteem and feel rewarded by, rather

than regretful of, the decision to donate one year after the procedure. Most potential and

actual donors reported that they did not feel under family pressure to donate. Saving the

patient's life and gratitude from the patient and family were noted as being the primary

reasons for donating. All subjects but one were found to have a normal WISC or WAIS

scores and only 2 who had previously identified psychiatric diagnoses had an abnormal

MMPI profile as defined by elevations on the clinical scales. Dissatisfaction with being a

kidney donor was related to rejection of the kidney by the transplant recipient, or because

of unrealistic expectations about how the donation process would influence the donor's

emotional state or family status. Although this study examines live donation, it suggests

that adolescents may be particularly responsive to donation appeals that emphasize the

benefits of their contribution to the health of others and that focus on how being an organ

donor may be perceived positively by others. Ross (1993) discussed the moral and ethical

aspects of using adolescents as donors and suggested that by becoming a donor for a

family member, the interests of the family as a whole are served. However, child donors

should be used only when an intimate relationship exists with the patient, when there is

no other available donor, and when the adolescent can give meaningful assent. Ross









(1993) presents evidence that children are able to give informed consent by the ages of

12-14 and suggests that, although parents have final authority, children should be

involved in their medical decision making.

Scherer (1991) compared the responses of 40 children (age 9-10), 40 adolescents

(age 14-15) and 47 young adults (age 21-25) to 3 medical decision vignettes in which the

degree of parental influence on making a decision about medical care was varied. In 2 of

the 3 vignettes, dealing with tonsillitis and wart removal, most subjects based their

decision on parental wishes expressed in the vignette. This suggests that adolescents

usually seek parental advice for future-oriented, life-determining decisions. Interestingly,

in the 3rd vignette regarding kidney donation, the groups labeled as adolescents and young

adults were significantly less likely than those designated as children to defer to parental

influences. Scherer's study suggests that while parental influences may have a

considerable effect on adolescents' medical decisions, adolescents and young adults may

display greater autonomy in making decisions regarding live-organ donation.

Thompson (1993) examined 30 African-American adolescents age 14-18, who

participated in a discussion group about organ donation. Twenty-six African-American

adults participated in adult discussion groups and 16 adults and 17 adolescents

participated in parent-child discussion groups. Subjects' knowledge of organ donation

procedures and willingness to consider organ donation was obtained. The data indicated

that adolescents (73%) were more willing to sign a donor card than were the adults

(35%). Interestingly, a study of 683 college students age 17-21 also found that a greater

percentage of African American students were willing to grant permission for organ

donation when compared to African Americans in the general population (Rubens, 1996).









Overall, the 17-21 year old group was very similar to the general population in terms of

the percentage who had signed a donor card or who had a donor designation on their

license. These studies raise the question of whether parental or other adult influences act

as a barrier to the transformation of positive donation attitudes held by adolescents into

actual donor card signing, particularly in the African-American population.

Comazzi and Invernizzi (1972) studied 82 high school students in Italy and

revealed that this group of adolescents was more hesitant about donating their heart than

their corneas or kidneys. Willingness to accept an artificial organ was greater than

willingness to accept an organ from another human or from an animal. Willingness to

donate was reportedly proportional to the level of willingness in the general public at the

time of the study. The implications of this study are that adolescents may not differ from

adults in organ donation behaviors. It is possible that adolescent attitudes are more

positive than the donation attitudes held by the general public, or that adolescent attitudes

are based on foundations different than those that influence adult attitudes. However, the

study fails to address these possible differences. Furthermore, such differences may be

obscured in examining only donation behaviors as parents who are against donation may

not allow their child to become a donor. Finally, given that this study was performed

many years ago and in another country, it is uncertain how closely the results generalize

to the attitudes and behaviors of present-day adolescents living in the U.S.

Two intervention studies aimed at increasing donation within adolescent

populations also have been performed. First, Sarason, Sarason, Pierce, and Shearin

(1991) compared psychological and educational approaches to increasing blood donation

in 9,378 students of 66 high schools in the U.S. Experimental approaches were compared









to the typical approach made by blood donation centers. Donation rates were increased

more by the approach emphasizing modeling and social norms than by the educational or

customary approach.

Second, an organ transplant education package (consisting of a video, student

activities book, and teacher guidebook) was introduced into the curriculum of 600

schools in Australia (Thompson, Knudson, & Scully, 1997). Forty-four schools reported

using the kit on a regular basis, primarily with 11th graders (age 16-17) but also with

individuals in grades 7-12. The program was designed to facilitate discussion by

immersing students in transplant and donation issues. Student perceptions were sought

out and challenged, and negative and positive aspects of donation were raised, leaving the

students to formulate their own positions on donation. A small number of schools were

surveyed to examine the effectiveness of the educational package. Reportedly, the kit

was well received and it promoted positive attitudes toward donation and transplantation.

Interestingly, parents stated that the introduction of the topic at school often preceded any

discussion of the issues at home, although most students reported discussing the issues

among themselves rather than with their parents. These findings suggest that allowing

adolescents autonomy in deciding to sign an organ donor card might decrease potentially

negative adult influences and still lead to communication with family members regarding

donation intentions. In addition, it appears that interventions might be most effective if

presented before an individual obtains a driver's license. If communication occurs

between the adolescent and parent regarding the decision to become a donor, the child

who has decided to become a donor as a result of the intervention may be able to use the

information learned to persuade the parent to consent and cosign the organ donor card.









While the available literature allows some preliminary conclusions to be drawn

about adolescent attitudes toward organ donation and some factors that may contribute to

the development of these attitudes, several serious problems exist with these previous

contributions. First, none of the previous studies deal specifically with adolescents

seeking out the driver's license. As a result, none primarily examine donation attitudes

and behaviors at this critical point where many teens may be asked to make their initial

decision about organ donation. Second, several of the studies focus on attitudes toward

live donation such as that of kidneys or blood. This fails to allow any specific

conclusions to be drawn about attitudes regarding consent to the posthumous donation of

organs and the factors that go into the formation of these attitudes. Third, most studies of

donation attitudes and behaviors used a small number of participants. Fourth, specific

groups, such as Italian high school students, African-Americans, and Australians were

used. Use of such groups makes questionable the generalization of such results to all

U.S. adolescents, particularly those seeking a driver's license.

The Role of Parents

Parents may play an important role in the organ donation attitudes and behaviors

of adolescents. According to Bukatko and Daehler (1992), parents serve as models for

children's knowledge, attitudes, and beliefs. Complex actions, including prosocial

behaviors such as becoming an organ donor, are thought to be learned primarily through

observing important others; in particular, one's parents. Consequently, it reasonable to

think that parental wishes may have an influence on medical decisions made by

adolescents, including the decision to become an organ donor. This possibility is

strengthened by research demonstrating that the attitudes and behaviors of parents have









been found to influence a number of adolescent behaviors ranging from teen alcohol use

to church attendance (Zhang, Welte, & Wieczorek, 1997; Francis & Gibson, 1993).

Furthermore, the initial decision to become a donor is thought to be influenced more by

social forces, suggesting that parental attitudes and behavior may play a significant role in

adolescent choices. However, as was discussed, parental wishes were less influential in

the area of live kidney organ donation (Scherer, 1991) compared to other medical

decisions. In addition, Thomson, Knudson, and Scully (1997) reported that parents and

teens often had not discussed organ donation before adolescents were exposed to

information about organ donation in the school system. This is consistent with research

using a college-age sample, which found that the act of deciding to donate appears to

drive discussion of donation with family members rather than discussion with family

driving donation decisions. Interestingly, when discussions about the desire to be an

organ donor were held with family, approximately 80% of subjects reported neutral or

positive responses by their family members (Birkimer et al., 1994). This suggests that, if

teens are first introduced to accurate information and positive attitudes about organ

donation through school or other sources, and encouraged to communicate their wishes to

family members, the rate of parental consent and donor card co-signing could be

increased.

The logistics involved in an adolescent under the age of 18 seeking a driver's

license also point to the fact that parents may be involved in their children's decision to

become a donor. In the state of Florida, when a driver's license is obtained at the motor

vehicle department, individuals under the age of 18 must be accompanied by a

parent/legal guardian who can sign a form declaring responsibility for the child. More









important, if adolescents under the age of 18 choose to have an organ donor designation

put on their license, parents must co-sign the organ donor card. Thus, communication

between parent and child regarding donation is likely to occur at the point of licensure.

The nature of these or previous interactions may predict adolescent attitudes and signing

of donor cards, but has not been studied to this point. Thus, little is known about how

interventions aimed at increasing organ donation among adolescents could also promote

strategies to help adolescents obtain parental consent. It is also noteworthy that since the

adolescent population is likely to discuss donation with a family member because of the

need for a co-signer, the adolescent's wishes would be more likely to be known and thus,

consent to procurement by family after the death of a potential adolescent donor may be

more likely than when adults choose to become donors, but fail to share this information

with family members.

Summary of Rationale

A review of relevant literature has suggested that organ donation is a multifaceted

process. Attitudes, knowledge, and communications about organ donation all have been

shown to influence donation behaviors. While much is known about the role of these

factors in the general population, efforts to increase the number of organ donors may

require that more specially tailored campaigns encouraging donation are designed based

on an assessment of what types of messages would be most effective with various groups.

The adolescent population may be the most open to messages regarding organ

donation and they comprise the largest pool of potential organ donors because of an

unfortunately high rate of accidental deaths. The overall goal of the current study is to

gain a better understanding of the organ donation attitudes and behaviors of adolescents









seeking their driver's license, a critical point in time just before they are likely to be faced

with making their initial decision about becoming an organ donor. It is essential to assess

variables which predict organ donation card signing behavior in adolescents in order to

develop an understanding of what factors both promote and prevent donation in this

population, and to appropriately inform the design of interventions to increase donation in

this population.

Aims of the Current Study

The specific aims and hypotheses of the current study are: 1) To assess organ

donation attitudes, knowledge, and frequency of donor card signing in a community

sample of adolescents, 2) To assess the nature and frequency of communication between

adolescents and their parents regarding organ donation as well as other sources from

which information regarding organ donation may have been obtained by adolescents, and

3) To determine whether adolescent and parent organ donation attitudes, knowledge, and

communication predict group membership as a donor or nondonor and to establish a

psychological profile detailing the common features of the members of these two groups..

In order to meet these objectives we will 1) Examine the extent to which license seeking

adolescents and their parents endorse positive and negative attitudes toward donation,

determine their level of accurate knowledge about organ donation, and measure the

frequency of donor card signing, 2) Obtain information regarding the frequency with

which adolescent-parent dyads have communicated about organ donation, and their

ratings of the positive or negative nature of these communications, and 3) Perform

descriptive discriminant analyses to determine the extent to which variables predict donor

status and assess how accurately the predictor variables are able to classify these groups









of individuals. Descriptive discriminant analysis was chosen specifically for its ability to

determine which metric variables predict membership in nonmetric categories. The

procedure determines the extent to which each variable in the model accounts for

differences in the average score profiles of each group (donor and nondonors) and also

allows for a profile analysis of the independent variables on which the groups differ

significantly. Adolescent attitudes, parent attitudes, adolescent knowledge, parent

knowledge, and adolescent report of frequency and nature of communications about

organ donation with parents will serve as the independent variables for this analysis, with

donor status serving as the classification or dependent variable.

Hypotheses

It is expected that organ donation attitudes, knowledge, and communication will

significantly and accurately predict group membership of adolescents as donors or

nondonors. We predict that, in comparison to those who do not become donors,

adolescents who become donors will have more positive attitudes toward donation,

greater knowledge about organ donation, have parents with more positive attitudes and

greater knowledge about organ donation, and have had more frequent and positive

communications with parents regarding organ donation.
















METHOD

Participants

Two hundred and fifty-eight adolescent-parent dyads (516 individuals) presenting

to the local Department of Motor Vehicles (DMV) in north central Florida were

approached to be participants in the organ donation research survey. All potential

participants were approached in the waiting areas of the DMV office and asked about

their willingness to participate in the study. In order to be admitted to the study,

participants had to meet the following inclusion criteria: 1) be adolescents between the

ages of 15 and 17, 2) be accompanied by a parent or guardian age 18 or older, 3)

adolescents must be seeking their first driver's license or driving permit, and 4) have the

ability to read. Participation was on a voluntary basis as no compensation was offered for

involvement.

Of the 258 adolescent-parent dyads approached, 48 dyads (18%) refused to

participate in the study. Only data on gender and ethnicity was obtained on those who

declined participation. Seventy-three dyads (29%) agreed to participate, but returned

surveys that were unusable in data analysis due to large amounts of missing data. This

resulted in a 47% non-response rate and a total sample size of 137 dyads or 274

participants who agreed to participate and completed the organ donation survey. Chi

square and t tests were conducted to determine the presence of any participation bias in

the final sample. The final sample of 137 dyads was comprised of fewer African-









Americans, X2 = 33.04, p < .001, and fewer people who indicated that they were of a

religious background other than Protestant, Catholic, Jewish, or who had no religious

affiliation, X2 =16.73, p< .001. Those returning complete surveys were found to have

significantly higher incomes, t(145) = 4.34, p <. 001, than those who turned in surveys

with missing data. No other demographic differences were found in comparing those

who completed the survey, to those who returned incomplete surveys and those who

refused participation.

An adolescent version and parent version of the organ donation survey was

completed separately by the license seeking child and their parent, respectively. Full

descriptive statistics for demographic data on participants can be found in Table 1.

Adolescent participants were primarily Caucasian (75.2%), female (58.2%), in the 10th

grade (62.2%), unemployed (88.4%) and of a protestant religious affiliation (37.7%). On

average, the adolescent participants were 15.45 years of age (SD=.64) Adult participants

were primarily Caucasian (75.2%), female (75.2%), married (71.6%), held a 4 year

college degree (24.1%), were employed (81.3%), and were protestant (45.7%). The

average age of adults in the study was 43.60 (SD=6.28).

Measures

Demographics Questionnaire

A demographics questionnaire designed by the author was used to obtain

demographic information from all participants including age, gender, race/ethnicity,

religious denomination, income, education level, occupational status, and marital status.

A copy of the demographics questionnaire can be found in Appendix A.










Table 1. Demographic Characteristics of Participants

Adolescents Parents

Variable % N % N
Gender
Male 41.8 56 24.8 33
Female 58.2 78 75.2 100
Ethnicity
Caucasian 75.2 100 75.2 100
African-American 14.3 19 15.8 21
Hispanic/Latino 5.3 7 3.8 5
Asian 1.5 2 1.5 2
Native American 3.8 5 3.8 5
Education
0-8h Grade 1.5 2 .8 1
Some High School 97.8 132 8.3 11
High School/GED 0 0 14.3 19
Some College .7 1 20.3 27
College Degree 0 0 35.3 47
Post Grad Work 0 0 21.1 28
Marital Status
Single 99.3 133 9.7 13
Married .7 1 71.6 96
Divorced 0 0 16.4 22
Separated 0 0 1.5 2
Widowed 0 0 .7 1
Occupational Status
Employed 11.6 15 81.3 109
Unemployed 88.4 114 12.7 17
Disabled 0 0 .7 1
Retired 0 0 5.2 7
Religious Affiliation
Protestant 37.7 49 45.7 59
Catholic 20.0 26 21.7 28
Jewish 2.3 3 1.6 2
None 18.5 24 15.5 20
Other 21.5 28 15.5 20










Table 1 continued.

Adolecents Parents

Variable M SD M SD

Age 15.50 .64 43.60 6.30

Reported Family Income 71459.02 64099.03 52687.44 35753.23









Organ Donation Attitudes Questionnaire

Attitudes toward organ donation were measured using a 46 item questionnaire

designed by Parisi and Katz (1986). Items are responded to using a 6 point scale ranging

from -3 (disagree strongly) to +3 (agree strongly). This measure was administered to 110

adults aged 17-66 and was found to reliably measure 2 dimensions, positive and negative

attitudes toward donation. An internal consistency of r = .89 for the positive attitude

scale, and r = 82 for the negative attitude scale are reported. Cronbach's alpha was

obtained for current sample. Alpha was found to be r = .90 for the positive attitude scale

and r = .91 for the negative attitude scale. The measure can also be broken down to

examine affective versus cognitive fears of organ donation. The positive and negative

attitude factors were found to be predictive of willingness to donate. A copy of this

measure is provided in Appendix B.

Organ Donation Knowledge Questionnaire

A 21 item true/false organ donation knowledge questionnaire developed and used

by Horton and Horton (1990) was used to test knowledge about donation and

transplantation. This measure asks about specific facts related to posthumous organ

donation and was administered to 455 undergraduate students, 26 MBA students, and 465

community members. Normative data on the overall percentage answered correctly as

well as the percentage for each question are available. The knowledge questions were

developed from several sources including information accompanying organ donor cards,

national surveys, and journal articles. A copy of this measure is provided in Appendix C.









Additional Organ Donation Research Questions

Questions specific to the proposed study which were created by the author were

also administered to participants. These questionnaires consisted of an adolescent and

adult version. Each questionnaire assessed donor status, the frequency and nature of

communications about organ donation between parent and adolescent, decisions made

based on these communications, parent and adolescent knowledge about one another's

donation preferences, and other possible sources of information about organ donation.

Space was also provided for any comments that participants might wish to convey. In

addition to the above information, the parent version of the questionnaire addressed

parental knowledge of communications with other family members and the license-

seeking adolescent regarding organ donation. A copy of questionnaire to be given to

adolescents is provided in Appendix D and a copy of the questionnaire to be given to

parents is provided in Appendix E.

Procedure

Consecutive adolescent-parent dyads presenting to the DMV for the purpose of

obtaining a first license or driving permit were approached and asked about their

willingness to participate in the study. Subjects were recruited upon completion of their

driving test while waiting for the processing of their license or permit. By interacting

with potential participants at this time, donation decisions had already been made so that

filling out the questionnaire did not influence the frequency of donor card signing. As

this study received exempt status from the University of Florida Health Science Center

Institutional Review Board, consent to participation was verbal. Individuals willing to

participate were asked to fill out the organ donation research questionnaire packet which






29


included the previously described questionnaires. Participants were instructed to answer

the questionnaire independently. The questionnaire was filled out in the waiting room

where license photos are taken and where customers wait to receive their license card.















RESULTS

Prevalence of Organ Donor Card Signing and Factors Influencing Donor Status

In total, 95 of the 274 participants (34.7%) reported that they were a potential

organ donor and had the organ donor designation placed on their driver license. Of the

adolescent participants, 36 (26.9%) became organ donors while 59 (43.1%) of the parents

reported being organ donors. A Pearson zero order correlation was computed to

determine the relationship between parent and adolescent donor status. As predicted,

parent donor status was found to be significantly correlated with adolescent donor status,

r =.30, E <.001. Interestingly, only 54.8% of adolescents reported that they recalled being

asked to be an organ donor while at the DMV. An additional 4.7% of adolescents

reported that they wanted to become organ donors, but could not because their parent

would not allow them to sign a donor card.

In order to determine whether age and income level differed based on donor

status, T-tests were conducted separately for adolescents and adults. Donor status (donor

vs. nondonor) served as the independent variable with age and income serving as the

dependent variables. No significant age differences between adolescent donors (M =

15.40, SD = .60) and nondonors (M = 15.47, SD = .66) were found, t(131) = -.38, p >.05,

nor was there a significant difference in age, t(130) = -.52, p > .05, between parent donors

(M = 43.50, SD = 5.54) and parent nondonors (M = 43.89, SD = 6.10). Similarly,









reported family income did not significantly differ by donor status for adolescents, t(58) =

.171, p >.05, or for parents, t(103) = .358, p > .05.

In order to determine if donor status was related to ethnicity, gender, education

level, marital status, occupational status, or religious affiliation, a series of Chi Square

analyses was performed. Each demographic variable was compared to the number of

participants categorized as either an adult donor, adult nondonor, child donor, or child

nondonor. Because of the small number of individuals participating from Hispanic,

Asian, and Native American populations, these groups were dropped from the analysis

leaving Caucasians and African Americans. No difference in frequency of donor status

was found for ethnicity, X2= 7.75, p> .05. Gender differences were found such that a

greater than expected number of adolescent males decided to remain nondonors, X2 =

8.68, p_< .05. In examining the relationship between occupational status and donor

status, employed adults were found have a greater frequency of being organ donors, X2=

5.87, pE> .05, than unemployed adults. No differences in donor status based on education

level, marital status, or religious affiliation were found.

Knowledge about Organ Donation

Analysis of the Organ Donation Knowledge Questionnaire revealed that the mean

number of questions answered correctly by participants was 13.78 (SD = 2.79) or

65.64%. A between subjects analysis of variance (ANOVA) was run to determine the

effect of donor status and age on knowledge about organ donation. Participants were

categorized as parent donors, parent nondonors, adolescent donors, and adolescent

nondonors and the percentage of correct answers on the Organ Donation Knowledge

Questionnaire served as the dependent variable. Means and standard deviations are









presented in Table 2. A significant omnibus effect between groups was found, F(3, 264)

= 14.71, p < .001. Post hoc comparisons examining mean differences across the groups

indicated that parent donors and parent nondonors scored higher than adolescent donors

and nondonors on the knowledge questionnaire. Although, on average, parents scored

significantly higher than adolescents, a Pearson zero order correlation was conducted

between parent and adolescent scores on the Organ Donation Knowledge questionnaire

and, as predicted, a significant relationship was observed between parent and adolescent

scores, r = .27, p < .001, suggesting that parents with greater knowledge had children with

greater knowledge about organ donation.

In order to determine the presence of a relationship between age, income, and

organ donation knowledge, Pearson zero order correlations were again conducted. The

only significant relationship was that between parent reported family income and

knowledge about organ donation, r = .21, 1 < .05. A second set of ANOVAs was run in

order to determine the effect of ethnicity, gender, education, marital status, occupational

status, and religious affiliation on knowledge about organ donation. Parents and

adolescents were analyzed separately on the variables of education and occupational

status because of expected group differences based on age and adolescents were removed

from the analysis for marital status as only 1 reported being married. Corrections for

multiple comparisons on demographic variables were not conducted in order to take a

more conservative approach to detecting demographic influences on dependent measures

that need to be accounted for in the interpretation of the results. Organ donation

knowledge was found to differ significantly by ethnicity, F(4, 270) = 11.54, p < .001.

Post hoc analyses revealed that Caucasians (M = 68.48%, SD = .13) obtained









Table 2. Means and Standard Deviations for Percentage Correct on the Organ Donation

Knowledge Questionnaire.



Group M SD n



Parent Donor 73.07 .13 58

Parent Nondonor 68.44 .14 75

Adolescent Donor 63.36 .12 36

Adolescent Nondonor 60.22 .13 96









significantly higher scores on the knowledge questionnaire than did African Americans

(M = 56.04%, SD = .10) or Hispanics (M = 55.56%, SD = .15). No effect for gender,

education, marital status, occupational status or religious affiliation was observed.

In order to determine which areas participants were least knowledgeable about,

and which may represent barriers to becoming an organ donor, an item by item analysis

was conducted in identify which questions were answered correctly by fewer than half of

the participants. This method was suggested by the developers of the knowledge

measure, Horton and Horton (1990). Items were analyzed separately for parent donors,

.parent nondonors, adolescent donors, and adolescent nondonors in order to examine if

different areas were problematic for each of these groups. Eighty-six percent of parent

donors answered item 4, regarding certification of death before organ donation,

incorrectly. Item 15, stating that a potential donor can be certain that his/her organs will

be transplanted if death occurs in a hospital, was answered incorrectly by 55% of parent

donors. Consistent with parent donors, item 4 was answered incorrectly by 91% of parent

nondonors. Sixty-eight percent of parent nondonors answered item 19 incorrectly. This

item asks about whether a donor car must be filed with the U.S. Department of Health

and Human Services to be valid. Item 20, regarding whether the ideal organ donor is a

young adult who has died of a head injury, was answered incorrectly by 51% of parent

nondonors.

Examining the items answered incorrectly by greater than 50% of the adolescents,

it was found that, consistent with their parents, 92% of adolescent nondonors and 83% of

adolescent donors answered item 4, regarding certification of death, incorrectly. Similar

to parent nondonors, 74% of adolescent nondonors and 72% of adolescent donors









answered item 19 incorrectly. Item 20, which was problematic for parent nondonors, was

also answered incorrectly by 51% of the adolescent nondonors and 56% of the adolescent

donors. Item 21, asking if organ donors tend to come equally from all racial and

socioeconomic groups, was answered incorrectly by 67% of adolescent nondonors and

75% of adolescent donors. Item 7, regarding the ethicality of the same physician treating

both the organ donor and recipient was answered incorrectly by 57% of adolescent

nondonors and 68% of adolescent donors. Adolescent nondonors had difficulty with

several questions on which adolescent donors did not score below 50% correct. The first

was question 15, which was also problematic for parent donors. Item 15, regarding

certainty of donation in the case of a hospital death was answered incorrectly by 51% of

adolescent nondonors. Adolescent nondonors also had difficulty with item 3 (54%

incorrect) which states that almost all Western religions support organ donation, and with

item 9 (52% incorrect) which states that a benefit of donating organs is obtaining

compensation for burial costs.

Organ Donation Attitudes

Overall, participant responses to the positive (pro-donation) scale (M = 32.85, SD

= 21.95) and the negative (anti-donation) scale (M = -30.82, SD = 24.80) of the Organ

Donation Attitude Scale (Parisi & Katz, 1986) indicated a moderate level of positive

attitudes toward donation and a low level of negative attitudes toward donation. The

sample of adults used by Parisi and Katz (1986) appeared to have higher positive attitude

scale scores (M = 52.25, SD = 12.70) and higher negative attitude scale scores (M =

31.59, SD = 11.66) possibly indicating a greater extent of both positive and negative

attitudes toward organ donation. Means and standard deviations for participant









responses are presented in Table 3. Scores are grouped by parents vs. adolescents and by

donor status. It is important to note in interpreting this data that numbers with a greater

positive value on the pro-donation scale indicate agreement with positive statements

while increasingly large negative number on the negative scale indicate less agreement

with negative attitudes toward donation. Thus, a high positive score on the pro-donation

scale would represent positive attitudes toward donation, while high positive scores on

the anti-donation scale would indicate negative attitudes toward donation. Scores range

from -69 to 69.

A between subjects ANOVA was computed to compare parent donors, parent

nondonors, adolescent donors, and adolescent donors on the positive and negative

subscales of the Organ Donation Attitude measure. Significant group differences were

found on the omnibus test for the positive attitude scale, F(3, 264) = 6.09, R <. 001, with

post hoc tests indicating that on the pro-donation subscale, adult donors had significantly

greater positive attitudes toward donation scores than adult and adolescent nondonors,

and adolescent donors had significantly greater positive attitudes than adolescent

nondonors. On the anti-donation subscale, significant differences were also found,

F(3,264) = 15.41, p < .001, with post hoc tests indicating that adult and adolescent

nondonors had significantly greater negative attitudes than adult donors, and adolescent

nondonors also had significantly greater negative attitudes that adolescent donors.

The demographic variables of age, income, ethnicity, gender, marital status,

occupational status, and religious affiliation were examined to determine their influence

on the Organ Donation Attitudes measure. No relationship was found between age,

income and scores on the negative or positive subscales of measure. A series of









Table 3. Organ Donation Attitude Questionnaire Means and Standard Deviations by

Donor Status and Parent vs. Adolescent Status.



Group M SD n


Positive Attitude Subscale

Adult Donors

Adult Nondonors

Adolescent Donor

Adolescent Nondonor

Negative Attitude Subscale


39.65ab

28.87a

42.11c

29.06"b


16.90

24.64

13.97

23.13


Adult Donors -46.72ab 17.76 58

Adult Nondonors -29.92a 22.10 75

Adolescent Donor -35.83c 19.69 36

Adolescent Nondonor -21.32b 26.96 96

Note: a,b, and c denote which groups are significantly different from one another.









ANOVAs were to conducted determine the effects of the remaining demographic

variables. Organ donation attitudes scores differed significantly by ethnicity on both the

positive subscale, F(4, 270) = 7.20, E < .001), and the negative subscale, F(4, 270) = 9.80,

p < .001). Post hoc tests revealed that, on the positive attitude subscale, Caucasians (M =

36.62, SD = 18.55) reported a higher level of positive attitudes toward organ donation

than did African-Americans (M = 20.04, SD = 30.37). On the negative attitudes subscale,

African-Americans ( = -13.44, SD = 24.00) had more negative attitudes toward organ

donation than did Caucasians (M = -36.01, SD = 23.13).

Significant differences between groups were also found for parental educational

level on the negative attitudes subscale F(4, 131) = 3.37, p < .05). Parents who had done

post graduate work, or held a degree such as an M.D. or Ph.D. had less negative attitudes

toward organ donation (M = -50.32, SD = 16.57) than parents who indicated that they had

some college (M = -33.22, SD = 25.16) or a college degree only (M = -35.76, SD =

20.21). Differences based on religious affiliation were also observed on both the positive

subscale, F(4, 263) = 4.01, pE< .01, and the negative subscale, F(4, 263) = 3.97, E < .01.

Post hoc analyses revealed that Catholics had higher scores on the positive attitudes

subscale (M = 38.69, SD = 18.47) than did individuals reporting a religious affiliation

designated as "other" (M = 22.98, SD = 30.35). Catholics (M = -34.69, SD = 25.14) and

Protestants (M = -35.46, SD = 24.66) had less negative attitudes toward donation than did

participants who reported a religious affiliation designated as "other" (M = -19.98, SD =

22.06). No significant differences were found for gender, marital status, or occupational

status.

Pearson zero order correlations were conducted in order to examine the presence









of relationships between positive and negative attitudes and knowledge about organ

donation. Greater knowledge was significantly related to less negative attitudes for

parents (r = -.35, p_< .05). For adolescents, greater knowledge about organ donation was

significantly related to both more positive attitudes (r = .38, p < .01) and less negative

attitudes (r = -.50, p < .01) about organ donation. The relationship between parent and

adolescent attitudes toward donation was also analyzed using Pearson zero order

correlations. As predicted, the positive attitude scores of parents and adolescents (r = .44,

p < .01) as well as negative attitude scores (r = .48, p < .01) were significantly correlated.

Communication about Organ Donation

Parents and adolescents responded to a survey asking various questions about

their communication with one another regarding organ donation. Of the parents

participating in the study, mothers participated most frequently (76.1% of the time).

Overall, 51.8% (n = 71) of parent-adolescent dyads had spoken about organ donation.

Parents reported that they had spoken with their license seeking adolescent about organ

donation an average of 1.07 times (SD = 1.57). This was consistent with their

adolescents who reported having an average of 1.04 (SD = 1.30) conversations about

organ donation with their parent. A Chi Square analysis was conducted to determine if

parents who were donors spoke more with their children about organ donation than

nondonor parents. As expected, a significantly higher frequency Q(N= 21.00, p_>. 001) of

parents who were donors discussed organ donation with their adolescent children in

comparison to parents who were nondonors. Furthermore, of parents who discussed

donation with their child, those who were donors spoke about organ donation more often,

t(131) = 3.63, p < .05). No difference was found for adolescent donor status based on









which parent had spoken with the adolescent about organ donation (X = 3.22, p<. 05).

A high percentage of both parents (56.9%) and adolescents (62.0%) reported that

they had had been the one who started the conversation about organ donation. A majority

(77.5%) of participants reported that communication about organ donation occurred prior

to coming to the DMV and being asked about donor status. Sixty-five percent of

adolescents reported that they had made a decision about organ donation before talking to

a family member about organ donation, and 84.0% reported that they were planning on

becoming an organ donor. Although a much smaller percentage actually became organ

donors, 67.3% of adolescents reported that after discussing donation with their parents,

they remained committed to being an organ donor. An additional 8.2% decided to

become a donor as a result of their discussion with a parent or other family member, 6.1%

chose to become a nondonor, and 18.4% remained a nondonor. Nineteen percent of

respondents indicated that they had spoken to a family member other than or in addition

to the parent filling out the questionnaire regarding organ donation. Given that mothers

served as the majority of parent participants, it is not surprising that 46.2% of those who

spoke with another family member about donation spoke with their father. Complete data

on which family members actually spoke to the license seeking adolescent about their

own organ donation status organ donation are presented in Table 4.

Parents and adolescents were asked not only to report the frequency of their

communications regarding organ donation, but also to rate the quality of these

conversations. The average quality rating by adolescents of their conversations with

parents about organ donation was 5.13 (SD = 1.33) on a scale ranging from 1 (very

negative) to 7 (very positive). Parents rated the quality of organ donation conversations at









Table 4. Parent and Adolescent Responses to Questions Regarding Who Discussed Their

Organ Donation Status



Family Member Discussing Percent Who

Donation Status* % n Were Donors** % n



Parent Survey Responses

Mother 35.6 42 65.2 43

Father 26.1 23 48.8 21

Stepmother 7.4 2 16.7 1

Stepfather 11.5 3 44.4 4

Adolescent Survey Responses

Mother 44.1 60 44.7 42

Father 35.2 38 40.5 32

Stepmother 4.0 1 6.3 1

Stepfather 19.2 5 22.2 4

Note: denotes that the percentage is taken only from those who discussed organ
donation. ** denotes that the percentage is taken from the total number of participants.









a similar quality level (M = 5.10, SD = 1.60). Parents who were donors rated the quality

of conversations about organ donation with their adolescent significantly more positively,

t(64) = 4.90, E < .05, that did parents who were nondonors. Likewise, adolescents who

became donors rated the conversations held with their parent about donation more

positively, t(69) = 3.58, E < .05.

Pearson zero order correlations were run to examine the relationship between

quality of discussions about organ donation, and the organ donation knowledge and

attitude scores. While no relationship was found for adults, for adolescents, positive

attitudes were significantly correlated with having more frequent (r = .35, p < 01) and

more pleasant conversations about organ donation (r = .40, p < .01). Negative adolescent

attitudes toward organ donation were significantly correlated with having fewer (r = -.24,

p < .05) and less pleasant conversations (r = -.41, E < .01) about organ donation.

The influence of demographic factors on the communication variables of

frequency and quality of discussions regarding organ donation were examined. No effect

for age or income was found. Ethnicity was found to play a significant role in the

frequency, F(2, 128) = 3.42, 2 < .05, and quality, F(2, 59) = 4.35, R < .05, of discussions

with post hoc analyses revealing that Caucasians (M = 1.18, SD = 1.36) had more

conversations about organ donation than did African-Americans (M = .15, SD = .29) and

Caucasians (M = 5.25, SD = 1.57) rated the quality of their conversations with about

donation as being more positive than did Hispanic participants (M = 3.00, SD = 1.83).

Frequency of discussion about organ donation was found to differ significantly, F(4, 131)

= 3.71, p < .01, by education level, with post hoc analyses revealing that participants who

had gone beyond a college degree had more conversations with their child about organ









donation that did those participants who had only a high school degree or GED. No

differences for gender, occupational status, marital status, or religious affiliation were

found.

In order to determine if general level of communication and quality of the parent

child relationship could account for the frequency and quality of communication about

organ donation between parents and adolescents, parents and adolescents rated their

general level of communication with one another on a scale ranging from 1 (I rarely

discuss anything) to 5 (I discuss almost everything with my child) and also rated the

quality of their relationship on a scale ranging from 1 (excellent) to 5 (poor). Pearson

zero order correlations were computed. No relationship between frequency and quality of

communications about organ donation and general level of communication and quality of

the parent-child relationship was found.

Finally, participants were asked to indicate from which sources they had been

exposed to information about organ donation. Outside of family, for both adolescents

(31.4%) and parents (49.6%), the media served as the primary source of information

about organ donation. The frequency with which information about organ donation came

from other sources is presented in Table 5.

Descriptive Discriminant Analyses

In order to examine the ability of organ donation attitudes, knowledge, and

communication about donation to differentiate between donors and nondonors, two

descriptive discriminant analyses were performed. In the first, adolescent and parent

knowledge, attitudes, and frequency of communication served as the independent

variables with donor status of the adolescent (donor or nondonor) serving as the









Table 5. Sources of Information about Organ Donation



Source % n



Adolescent Respondents

Parents 48.9 67

Siblings 7.3 10

Other Family 8.0 11

Peers 19.0 26

School 26.3 36

Internet 5.8 8

Media 31.4 43

From a Donor 10.2 14

From Transplant Recipient 7.3 10

Doctor/Health Professional 8.0 11

DMV 13.1 18









Table 5 continued


Source % n



Parent Respondents

Parents 13.3 18

Siblings 4.4 6

Other Family 11.1 15

Peers 16.3 22

School 4.4 6

Internet 2.2 3

Media 49.6 67

From a Donor 5.9 8

From Transplant Recipient 6.7 9

Doctor/Health Professional 26.7 36

DMV 23.7 32









dependent variable. A second analysis was performed in which the nature of

communications about organ donation between parent and adolescent was added to the

independent variable list. This analysis could only be performed with those participants

who had engaged in at least one conversation about organ donation and thus, were able to

rate the nature of this conversation.

Analysis One MANOVA

Group means for donor and nondonor adolescents on each of the independent

variables used in the first discriminant analysis are presented in Table 6. MANOVA

results generated from the discriminant analysis are presented in Table 7. Organ donor

adolescents were found to differ significantly from nondonor adolescents on both the

negative attitude and positive attitude subscales of the Organ Donation Attitudes

Questionnaire. The positive and negative attitude scores obtained from parents of donor

versus nondonor adolescents were also significantly different. Frequency of discussions

about organ donation differed significantly between donor and nondonor adolescents.

Adolescent donor versus nondonor knowledge scores were close to being significantly

different, but no differences were found between groups on parental knowledge scores.

Analysis One Test for Multivariate Normality

Given the unequal group sizes of donor versus nondonor adolescents, and the

tendency of discriminant analysis to overclassify observations into the larger group

(nondonors), group specific covariance matrices were used, as suggested by Hair,

Anderson, Tatham, and Black (1995), to minimize this effect. Box's M was obtained in

order to assess the multivariate normality of the independent variables. No significant

violations of normality were detected (Box M = .137, p = .713).









Table 6. Discriminant Analysis Group Means for Adolescent Donors and Nondonors on

Organ Donation Attitudes, Knowledge and Frequency of Communication



Donors Nondonors

Independent Variable M SD n M SD n


Positive Attitude (Adolescent) 42.11 13.97 36 28.22 23.63 96

Negative Attitude (Adolescent) -35.83 19.69 36 -21.52 26.67 96

Positive Attitude (Parent) 42.42 16.00 36 30.23 23.32 96

Negative Attitude (Parent) -44.53 17.16 36 -34.99 23.34 96

Adolescent Knowledge (% correct) 81.49 1.07 36 60.36 .11 96

Adult Knowledge (% correct) 72.03 .13 36 69.98 .13 96

Frequency of Communication 1.47 1.50 36 .86 1.18 96









Table 7. Discriminant Analysis MANOVA Results


Independent Variable

Positive Attitude (Adolescent)

Positive Attitude (Parent)

Negative Attitude (Adolescent)

Negative Attitude (Parent)

Knowledge (Adolescent)

Knowledge (Parent)

Frequency of Communication


F value

10.97

8.32

8.59

4.99

3.70

.65

5.92


Significance Level

.001

.005

.004

.027

.057

.422

.016









Analysis One Discriminant Function

The discriminant function was computed using simultaneous estimation of all

independent variables given that the optimal ordering of variables was not known a priori

and the purpose was to determine the extent to which knowledge, attitudes, and

communication each contributed to prediction of donor status. As there were only two

groups (donors and nondonors), one discriminant function was generated to predict group

membership. As predicted, the function was found to be able to significantly differentiate

between donors and nondonors based on attitude scores, knowledge scores and reported

frequency of communication about organ donation (Wilks Lamda = .858, 2 = .007). In

order to examine the relative importance of each variable in discriminating between

which adolescents become donors versus nondonors, discriminant loadings, or the

correlation between each independent variable and the discriminant function, were

obtained and are presented in Table 8. Variables are ordered by the absolute size of their

correlation with the discriminant function. Each independent variable's standardized

canonical discriminant function coefficient is also presented in Table 8. Adolescent

positive attitude scores had the greatest influence in determining whether adolescents

became donors or nondonors. Adolescent negative attitude scores were next in

importance, followed by parent positive attitude scores, frequency of communication

about organ donation, parent negative attitude scores, child knowledge about donation,

and lastly adult knowledge about organ donation, which made little contribution.

Analysis One Classification Results

In order to assess the overall fit of the discriminant function, classification results

were examined. Overall, the variables of organ donation attitudes, knowledge, and










Table 8. Discriminant Loadings and Standardized Canonical Discriminant Function

Coefficients For Analysis One Ordered by Importance of Loading.



Variable Discriminant Loading Coefficient


Positive Attitude (Adolescent) .714 .420

Negative Attitude (Adolescent) -.632 -.302

Positive Attitude (Parent) .622 .266

Frequency of Communication .525 .271

Negative Attitude (Parent) -.482 -.198

Adolescent Knowledge .414 .341

Parent Knowledge .174 -.198









frequency of communication were able to correctly predict the donor status of 75.8% of

the adolescent participants. For nondonors, 95.8% (n = 92) were correctly classified, and

4.2% (n = 4) were incorrectly classified. Due to having a much lower sample size, fewer

donors, 22.2% (n = 8) were accurately classified and 77.8% (n = 28) were incorrectly

classified as nondonors. Press' Q statistic was significant at the .01 level suggesting that

the classification accuracy was at an acceptable level and that the variables making up the

function adequately differentiate between adolescent donors and nondonors.

To be conservative, both the maximal chance criterion and the proportional

chance criterion were also computed to examine if the rate of accurate classification was

truly better than chance. The maximal chance criterion is based on the sample size of the

largest group, nondonors, which make up approximately 70% of the sample. Given that

75.8% of participants were accurately grouped as donors or nondonors, the maximal

chance criterion of 70% is exceeded and suggests the function predicts group membership

better than chance. The proportional chance criterion, which takes into account the

unequal sample sizes of donors versus nondonors and which is more appropriate for the

current analysis, was determined to be 60.4%. Again, the 75.8% classification rate is

substantially greater than this criterion and adds additional support that the independent

variables function significantly better than chance at classifying adolescents as donors or

nondonors. It is important to note again that the function was best at categorizing

adolescents who did not become donors because of the larger sample size of this group.

Analysis One Profile Analysis

Given that the discriminant function was found to be significant, a profile analysis

of group means was conducted to determine the attributes of donors versus nondonors.









As predicted, adolescents who became donors had significantly more positive attitudes

toward donation and significantly less negative attitudes toward donation. Their parents

also had significantly more positive and less negative attitudes toward donation.

Adolescent donors had engaged in a greater amount of communication with their parents

about organ donation. Finally, a trend was noted toward adolescent donors having greater

knowledge about the donation process than nondonor adolescents.

Analysis Two

In order to determine the influence of how positive or negative the

communications between parents and adolescents about organ donation were, a second

discriminant analysis was conducted adding in this variable. This analysis was conducted

separately as only 71 participants had held conversations about organ donation with their

parents and could make a rating of the nature of this conversation. Group means for

donor and nondonor adolescents on each of the independent variables used in this second

discriminant analysis are presented in Table 9.

Analysis Two MANOVA

MANOVA results generated from the second discriminant analysis are presented

in Table 10. Organ donor adolescents differed significantly from nondonor adolescents

on the negative attitude subscale of the Organ Donation Attitudes Questionnaire such that

nondonors scores suggested more negative attitudes toward donation. The positive

attitude scores obtained from parents of donor versus nondonor adolescents were also

significantly different such that parents of donors had more positive attitude scores. The

nature of discussions about organ donation differed significantly between donor and

nondonor adolescents such that donor adolescents rated their communications about









Table 9. Second Discriminant Analysis Group Means for Adolescent Donors and

Nondonors on Organ Donation Attitudes, Knowledge, and Frequency and Nature of

Communication


Donors Nondonors

Independent Variable M SD n M SD n


Positive Attitude (Adolescent) 42.81 11.54 27 36.61 17.63 44

Negative Attitude (Adolescent) -40.96 17.01 27 -26.20 27.41 44

Positive Attitude (Parent) 44.56 14.01 27 33.43 19.66 44

Negative Attitude (Parent) -45.78 15.79 27 -37.39 21.18 44

Adolescent Knowledge (% correct) 90.47 1.22 27 63.40 9.93 44

Adult Knowledge (% correct) 73.11 .14 27 73.66 .13 44

Frequency of Communication 1.96 1.43 27 1.84 1.12 44

Nature of Communication 5.81 1.30 27 4.74 1.18 44









Table 10. Second Discriminant Analysis MANOVA Results


Independent Variable

Positive Attitude (Adolescent)

Positive Attitude (Parent)

Negative Attitude (Adolescent)

Negative Attitude (Parent)

Knowledge (Adolescent)

Knowledge (Parent)

Frequency of Communication

Nature of Communication


F value

2.64

6.58

6.31

3.15

2.15

.03

.16

12.82


Significance Level

.109

.013

.014

.080

.147

.866

.690

.001









organ donation more positively. No differences in knowledge were observed.

Analysis Two Test for Multivariate Normality

Group specific covariance matrices were again used to minimize the effect of

unequal variances based on unequal group sample sizes. Box's M was obtained in order

to assess the multivariate normality of the independent variables. No significant

violations of normality were detected (Box M = .001, 2 = .980).

Analysis Two Discriminant Function

The discriminant function was again computed using simultaneous estimation of

all independent variables. The function was found to be able to significantly differentiate

between donors and nondonors based on attitude scores, knowledge scores and the

reported frequency and nature of communications about organ donation (Wilks Lamda =

.763, p = .025). In order to examine the relative importance of each variable in

discriminating between which adolescents become donors versus nondonors, discriminant

loadings, or the correlation between each independent variable and the discriminant

function, were obtained and are presented in Table 11. Variables are ordered by the

absolute size of their correlation with the discriminant function. Each independent

variable's standardized canonical discriminant function coefficient is also presented in

Table 11. Interestingly, the positive or negative quality of communications about organ

donation between parents and adolescents became the most important variable in the

classification of donor status. Parent positive attitude scores were next in importance,

followed by adolescent negative attitude scores, adult negative attitude scores, adolescent

positive attitude scores, adolescent knowledge, frequency of discussions about organ

donation, and finally, adult knowledge about organ donation.









Table 11. Discriminant Loadings and Standardized Canonical Discriminant Function

Coefficients For Analysis Two Ordered by Importance of Loading



Variable Discriminant Loading Coefficient


Nature of Communication .773 .753

Positive Attitude (Parent) .554 .378

Negative Attitude (Adolescent) -.543 -.350

Negative Attitude (Parent) -.384 .206

Positive Attitude (Adolescent) .351 -.112

Adolescent Knowledge .317 .457

Frequency of Communication .087 -.117

Parent Knowledge -.037 -.050









Analysis Two Classification Results

In order to assess the overall fit of the discriminant function, classification results

were examined. Overall, the variables of organ donation attitudes, knowledge, frequency

of communication, and nature of communication were able to correctly predict the donor

status of 70.4% of the adolescent participants. For nondonors, 81.8% (n = 36) were

correctly classified, and 18.2% (n = 8) were incorrectly classified. Due in part to lower

sample size, fewer donors, 52% (n = 14) were accurately classified and 48% (n = 13)

were incorrectly classified as nondonors. Press' Q statistic was significant at the .01

level suggesting that the classification accuracy was at an acceptable level and that the

variables making up the function adequately differentiate between adolescent donors and

nondonors.

Both the maximal chance criterion and the proportional chance criterion were also

computed to examine if the rate of accurate classification was truly better than chance.

The maximal chance criterion was calculated to be 62%. Given that 70.4% of

participants were accurately grouped as donors or nondonors, the maximal chance

criterion of 62% is exceeded and suggests the function predicts group membership better

than chance. The proportional chance criterion, which takes into account the unequal

sample sizes of donors versus nondonors, was again used and determined to be 52.9%.

Again, the 70.4% classification rate is substantially greater than this criterion and adds

additional support that the variables function significantly better than chance at

classifying adolescents as donors or nondonors. Similar to the first function, nondonors

were more accurately classified because of greater representation in the sample.









Analysis Two Profile Analysis

Given that the discriminant function was found to be significant, a profile analysis

of group means was conducted to determine the attributes of donors versus nondonors.

The profile of the second discriminant analysis differed from that of the first, but is

specific to only those participants who discussed organ donation with their parents.

Within this group, adolescents who became donors had parents with significantly more

positive attitudes about organ donation, had experienced significantly more positive

communications with parents about organ donation, and had significantly less negative

attitudes about organ donation. There was also a trend toward parents of donor

adolescents to have less negative attitudes about organ donation.
















DISCUSSION

Adolescent Knowledge about Organ Donation

The first goal of the current study was to examine the extent of knowledge about

organ donation in an adolescent population. Our results revealed that, on average,

adolescents demonstrated greater than chance performance (60-63% correct) on the organ

donation knowledge questionnaire suggesting some level of exposure to information

regarding organ donation. Adolescents did score lower than parents, but a significant

relationship between parent knowledge scores and adolescent scores was observed and

may suggest common exposure to some level of information about organ donation or the

effects of communication between parent and child regarding organ donation facts.

Knowledge scores were comparable to those found in a previous community sample of

adults (Horton & Horton, 1990). Interestingly, while parents scored higher than

adolescents, there was not a significant difference between donor versus nondonor

parents or between donor versus nondonor adolescents.

Performing an item by item analysis of the accuracy of responses to the

knowledge questionnaire allowed for specific deficits in knowledge about organ donation

to be highlighted. Consistent with previous research (Franz et al., 1997; Gibson, 1996,

Riether & Mahler, 1995; Horton & Horton 1990; Jasper, Harris, Lee & Miller, 1991), the

concept of certifying death was most problematic for both adolescents and parents. This

area may be one of the most significant knowledge barriers to address in providing the









public with information about organ donation. Given the complex nature of the topic, the

declaration of death should be clearly and simply explained to potential adolescent donors

and their parents. The use of life support should specifically be clarified so that cardiac

and pulmonary activity is not misinterpreted as being sustained by brain activity. Another

problem area for both adolescents and parents was the idea that donor status must be filed

with the U.S. Department of Health and Human Services. The mere perceived hassle of

this erroneous belief certainly may contribute to lower donation rates. Adolescents also

demonstrated poor knowledge about the fact that their population would make ideal organ

donors in the case of head injury. Knowing this fact might help persuade more

adolescents to become potential donors as the idea that their organs would more likely be

used and beneficial to the life of another could be strongly rewarding and persuasive.

Nondonor adolescents demonstrated a lack of knowledge on a number of additional

questions. Specifically, they had greater difficulty with questions asking about whether

Western religions support organ donation, whether potential donors can be certain that

their organs will be transplanted if death occurs in a hospital, and whether burial costs are

provided to the families of organ donors. Appropriate information about the organ

donation process, next of kin donation requests, and religious beliefs and values regarding

organ donation, therefore, appear needed in order to clarify troublesome questions for the

nondonor adolescent and perhaps remove these areas as knowledge barriers to becoming

organ donors.

Organ Donation Attitudes in Adolescents

A second major aim of the current study was to examine the nature of attitudes

toward organ donation in an adolescent population faced with making an initial decision









about becoming an organ donor. Overall, participants indicated moderately positive

attitudes toward donation and very few negative attitudes toward organ donation.

Adolescent donors had significantly greater positive attitude scores than adolescent

nondonors and significantly less negative attitudes than nondonors. These results suggest

that adolescent donor status is influenced by the attitudes which are held about donation.

In turn, adolescent attitudes toward donation appear to be generated in part from

knowledge about donation and in part from parental attitudes about donation as both

knowledge and parental attitudes were found to be significantly related to adolescent

attitudes.

The observed relationship between parent and adolescent attitudes about organ

donation is consistent with social modeling theories concerning the idea that adolescents

likely internalize the attitudes of their parents who serve as role models for a variety of

beliefs and behaviors (Bukatko & Daehler, 1992). Parents who have positive attitudes

about organ donation may share these attitudes with their children and model related

traits, such as altruism. Setting this type of example might shape adolescents to be more

favorable toward becoming organ donors. In addition, the modeling behavior may be as

simple as the adolescent having seen the organ donor designation on their parents' license

which might influence the adolescent to behave in the same manner given that their

parent may be serving as the primary social norm for this behavior. Peers who have

gotten their license may also be a powerful model for becoming an organ donor,

particularly given that teenagers are likely to discuss getting their license with friends and

show each other their license. Approximately 20% of the adolescents surveyed reported

that they obtained information about becoming an organ donor from a peer. The









observed relationship between knowledge and organ donation attitudes is also consistent

with previous findings in the literature (Radecki & Jaccard, 1997; Horton & Horton,

1990) that suggest greater knowledge about organ donation leads to more favorable

attitudes toward donation, which directly increases the likelihood of organ donor card

signing.

Communications About Organ Donation

Directly communicating with one's family regarding organ donation might be a

primary way for parents and adolescents to positively or negatively influence one

another's organ donation knowledge, attitudes, and donor preferences. The

communication of one's organ donation wishes is vital to family decisions regarding

consent to organ procurement. Consequently, a third major aim of the current study was

to look at the nature of communications about organ donation between parents and

adolescents. It was our intention to go beyond a mere count of how many people

discussed their donor status with family members by looking at the quality, sources, and

stimulating factors of the communications which occurred.

Approximately 52% of the parent-adolescent dyads reported communicating about

organ donation and the majority of participants had only discussed organ donation on one

occasion. Parents were the most common source from which adolescents obtained

information about organ donation, with mothers most frequently being the family member

to discuss donation with the adolescent. The media served as parents' primary source of

information about organ donation. Donor parents were significantly more likely to

discuss donation and held a significantly greater number of conversations about organ

donation with their license seeking adolescent than did nondonor parents. The majority









of participants reported that communication occurred prior to going to the DMV and

being asked about donor status. Unfortunately, the question of whether parents or

adolescents initiated conversation about organ donation remains unclear as a nearly equal

percentage of parents and adolescents reported that they recalled being the one to initiate

the conversation. Therefore, it is possible that adolescents who decided to become

donors or who were questioning what to do about their donor status initiated discussion

with their parents. Alternatively, parents who anticipated their child having to make a

decision about organ donation while at the DMV or who wanted to influence their child's

donor status may have raised the topic for discussion.

Although only a small percentage of adolescents actually became organ donors

(26.9%), an examination of communication factors suggests that discussing organ

donation with parents does not often serve as a barrier to donation. Only 6% of

adolescents were convinced by parents to become a nondonor compared with 8% who

were convinced that they wanted to become a donor after speaking with a parent. One

must consider however, that parents who are nondonors may serve as barriers to

adolescent donation not through direct discussion, but by modeling nondonor attitudes,

beliefs and behaviors. However, of the 65% of adolescents who had made a decision

about organ donation before speaking with their parent, a majority (84%) had decided to

become donors. Both parents and adolescents rated their communications with one

another about organ donation as being somewhat positive and donors rated

communications as being significantly more positive than nondonors. Positive adolescent

attitudes toward donation were also found to be significantly related to having more

frequent and more pleasant conversations about organ donation. General frequency of









communication between parents and adolescents and the quality of the parent-child

relationship were not related to communications about organ donation.

The Commitment to Becoming an Organ Donor

The willingness to become a donor based on one's knowledge and attitudes about

organ donation does not necessarily translate into the actual behavior of signing an organ

donor card. Thus, a fourth major aim of the current study was to look at the percentage of

license seeking adolescents who decide, with their parents' permission, to have the organ

donor designation placed on their license. Given the generally positive attitudes toward

organ donation expressed by adolescents, the fact that 84% reported that they were

planning on becoming an organ donor, and the fact that parents did not appear to be a

significant barrier to donation, the 26.9% rate of donor card signing among adolescents is

somewhat surprising. However, this percentage mirrors adult data presented in a review

by Radecki and Jaccard (1997) who also found that 85% of adults were in support of the

idea of organ donation, but only 28% of adults became organ donors. The adolescent

donation rate is even more surprising, however, when we find that 43% of the parents

surveyed reported that they were organ donors. We would have expected the rate of

adolescents becoming organ donors to be fairly concordant with the rate of donation

among parents.

Several barriers that might account for the low number of adolescent donors

should be considered. First, only 51.8% of parent-child dyads had discussed organ

donation, and only 32% of parents involved in these discussions were organ donors. On

average, parents felt that their adolescent child was only somewhat aware of their donor

status and 37.2% of parents indicated that they believed their child was completely









unaware of their donor status. Such a lack of communication and awareness of parental

donor status would decrease the ability of parent donors to serve as models for their

adolescent children. This lack of information could have led to the lower number of

adolescents becoming donors in comparison to the higher number of parents who

reported being organ donors as some adolescents may have been unable to form an

opinion about their donation status in the absence of any parental guidance on the matter.

Adolescents may have also decided not to become a donor because they did not have a

parent to clarify any fears or concerns about the donation process. The discrepancy

between parent and adolescent donor card signing rates highlights the need to increase

positive parental communication with adolescents regarding their donation status.

A second issue relates to the need for parents to cosign adolescent donor cards.

The DMV where the study was conducted can be a very hectic environment, and it is

presumable that most DMVs are very crowded and busy. As a result, many parents wait

outside or in areas removed from where their child takes the driving test and is processed

for the license ID card. If a parent is not around to cosign, adolescents and DMV workers

may simply decide it's not worth the hassle to find the parent to fill out the donor card.

While little can be done to decrease the level of business conducted at DMV offices,

interventions could be aimed at increasing parents' sense of responsibility for helping

their adolescent become an organ donor. Parents may also need greater awareness that

they are required to be part of the process in order to cosign the donor card signifying

their consent. Alternatively, efforts could be aimed at dropping the required parental

permission and promoting organ donation more directly with adolescents. Finally, work

should be done with DMV workers to increase their motivation to make donation









requests and to develop a maximally efficient system so that minimal time is consumed

on the donor request process.

The third and perhaps most alarming issue, however, is that only 54.8% of the

adolescents surveyed reported being asked if they wanted to become an organ donor

while at the DMV. If such a small percentage were asked about organ donation, it is not

all surprising that such a small number became donors. What is unclear is whether

adolescents simply do not recall being asked, or whether DMV employees simply did not

ask either because they forgot, were too busy, or did not want to have to wait for a parent

to be found in order to cosign the donor card. Taking the percentage of adolescents who

report that they were actually asked about organ donation and who then agreed to become

donors, the donor rate increases almost 22% to 48.6% which is also more concordant with

parental donor status. Thus, a substantial barrier to adolescent organ donation may lie in

the DMV request process. The lack of salience of the request or of other organ donation

information available at the DMV that might prompt adolescents to request a donor card

must be addressed. The need for parents to cosign the donor card may also play a

particularly significant role in the reluctance of DMV employees to ask adolescents about

becoming organ donors.

Predicting Donor Status

Beyond describing organ donation attitudes, knowledge, and communications in

an adolescent population, the fifth major aim of the current study was to examine the

utility of these variables in predicting the donor status of adolescents obtaining their

driver's license. The goal was to determine whether these variables that have served in

models predicting adult organ donation behaviors would also be effective for predicting









adolescent donation rates. In addition, if these variables are found to adequately predict

which adolescents do and do not become donors, group differences on each of the

predictor variables can be examined to obtain a more meaningful profile donor versus

nondonor attitudes, knowledge, and communication patterns.

In part, findings were consistent with a priori hypotheses. Positive and negative

organ donation attitudes, communication frequency, and knowledge about donation were

able to significantly discriminate between adolescent donors and nondonors. When all

participants were included in the analyses, regardless of whether communication between

parent and adolescent regarding organ donation had occurred, adolescent positive attitude

toward donation was the most important predictor of donor status. Adolescent negative

attitudes toward organ donation, parent positive and negative attitudes toward organ

donation, and frequency of communications regarding organ donation also contributed to

group classification. The direct ability of knowledge to help accurately predict donor

status was minimal. This is not surprising as knowledge was correlated with attitudes and

has been found to have an indirect influence on organ donation behaviors through attitude

formation rather than through a direct influence on donation behavior (Radecki &

Jaccard, 1997). Adolescent nondonors endorsed less positive and more negative attitudes

toward organ donation, had parents with less positive and more negative attitudes, and

held fewer conversations with parents regarding organ donation.

The findings of the second discriminant analysis, conducted only with data from

participants who had discussed organ donation with a parent and who were able to rate

the nature of this discussion, were less consistent with our hypotheses. The linear

combination of attitude, knowledge, and communication variables was able to









significantly discriminate between adolescent donors and nondonors. The nature of

communications between the parent and child became the most important variable in

predicting donor status while frequency of communications and parent knowledge about

organ donation made virtually no contribution to group classification. Parent and

adolescent attitudes, and adolescent knowledge continued to make moderate contributions

to group classification. Adolescent nondonors reported more negative communications

with parents regarding organ donation, more negative attitudes toward organ donation,

and had parents with less positive attitudes toward organ donation.

The results of the both descriptive and discriminant analyses allow for a profile of

donors versus nondonors to be generated. However, several demographic differences

were observed and should be accounted for in trying to establish a profile of donors

versus nondonors. The most common demographic feature that differentiated

participants on various measures was ethnicity. In comparison to African-American

participants, Caucasians had significantly higher knowledge scores, significantly more

positive and less negative attitude scores, and had significantly more frequent

conversations about organ donation. Caucasians were also found to have higher

knowledge scores and more pleasant conversations about organ donation than Hispanics.

These findings are consistent with previous literature (Rubens, 1996; Wheeler & Cheung,

1996; Yuen et al., 1998) regarding demographic factors and organ donation attitudes,

knowledge and behaviors in which minority groups, African-Americans in particular,

demonstrate the lowest level of support for organ donation and are the least likely to

become organ donors Hispanics have been found to have a level of support that lies

between that of Caucasians and African-Americans. Minority groups have also been









found to be less likely to discuss donation with a significant other (Wheeler & Cheung,

1996).

Educational and income differences between ethnic groups have been identified as

possible causes of differences in support for organ donation. However, recent research

(Yuen et al, 1998) does not support this relationship. Additional analyses were run in the

current study and consistent with Yuen et al. (1998) no differences were found between

people from different ethic backgrounds on income or education level, so another

explanation is required. The possibility that minority groups may have less access to

medical care and information about organ donation is one explanation. Differences in

religious beliefs and a lack of trust toward the medical community have also been offered

as possible reasons for ethnic differences in support of organ donation. The language

barrier may hinder some Hispanics from obtaining information about organ donation.

Finally, given that there are fewer African-American donors, African-American organ

recipients have a decreased likelihood of successful transplantation due to poor tissue

match unless the donor is also African-American. Thus, African-Americans may have a

negative attitude toward organ donation unless it can be assured that their organs are

given to another African-American individual. It is important to note that even though

attitude, knowledge, and communication differences were found based on ethnic

background, ethnic groups did not differ on the frequency of organ donation in the current

study suggesting that the ethnic differences would not have contributed greatly to the

prediction of donor status.

In regard to other demographic differences, gender played a role in donor status

such that more female adolescents than male adolescents became donors. The









demographic variable of income was found to be related to greater knowledge about

organ donation. Educational level was also found to lead to some differences between

participants. Parents with degrees beyond the undergraduate level were found to have

less negative attitudes toward donation than parents with only some college or an

undergraduate degree. Parents with graduate and medical degrees also reported

communicating with their adolescent children more often about organ donation than did

parents with only a high school education. These findings are all consistent with studies

showing that those who are more willing to be donors tend to be more affluent, better

educated, and female (Cleveland & Johnson, 1970; Simmons, Fulton, & Fulton, 1972).

In addition, parents with higher degrees may include physicians who are likely to be more

aware of organ donation because of their work in medicine and thus it is not surprising

that they spend more time discussing organ donation.

Finally, Catholics were found to have more positive attitudes about organ

donation than people who responded as having an "other" religious affiliation than those

listed (Catholic, Protestant, Jewish, None). Catholics and Protestants also had less

negative attitudes toward donation than did those who indicated that they were from an

"other" religious affiliation. Other religious affiliations that were written in by

participants included Jehovah's Witness, Pentecostal, Methodist, Universalist, Wiccan,

Holyness, Presbyterian, Christian, and Episcopal. It is presumable that some individuals

from other religious groups have beliefs that differ from the major Western religions

which support organ donation. These beliefs would account for differences in attitudes

toward organ donation. In particular, Jehovah's Witnesses and Methodists have specific

religious issues that would be opposed to organ donation (McQuay, 1987). Others may









be unaware of their religion's position on organ donation or be from a religion that has

not taken an official position on the matter. Therefore, they may be basing their attitudes

about organ donation on interpretations of other religious and spiritual matters.

Study Strengths and Significance

The current study has several strengths which allow for more conclusive

interpretations of our findings to be drawn. First, the measures of organ donation

knowledge and attitudes were chosen for their established reliability and validity in

measuring the constructs of interest. Second, actual donor status was collected rather

than using data such as willingness to donate. By obtaining actual donor status, true rates

of donor behavior and factors predicting actual donor behavior can be examined rather

than relying on variables such as willingness to become a donor which may not translate

very accurately to true donation rates. Third, data was collected from a community of a

fairly broad and diverse group of participants which increases the likelihood that findings

may generalize to other populations. Being at the DMV also avoided selection biases that

may have been present if specific schools or organizations were chosen to obtain

participants. Fourth, the sample size obtained allowed for adequate power to assist in

detecting the presence of a true relationship between donor status and organ donation

attitudes, knowledge, and frequency of communications regarding organ donation.

In addition to these strengths, the current study makes a significant contribution to

the existing literature on organ donation for a variety of reasons. First, by using measures

of organ donation attitudes, knowledge, and communication patterns to determine the

profile of adolescents who do and do not become donors, psychoeducational interventions

can now be designed to address specific knowledge deficits, attitudinal, and









communication barriers to donation in the adolescent population. Issues such as brain

death, religious support for donation, resistance to donation based on ethnicity, and

confusion over donation policies and procedures should be specifically addressed. Such

tailored interventions could potentially increase the number of adolescents willing to sign

an organ donor card. Given the high number of viable organs that might come from this

population, if more adolescents were donors, the number of organs available for

transplantation could be significantly increased.

Second, this study provides one of the most comprehensive examinations of

communication factors at play in donation decisions, specifically with adolescents.

Through this, it has become evident that psychologists interested increasing donations

from the adolescent population must address not only the adolescent, but parental factors

as well as DMV personnel and the donor request processes. Parental factors made a

significant contribution to whether adolescents did or did not become donors.

Specifically, interventions promoting positive outcomes from parent-adolescent

communications about donation should be developed based on the available findings.

Furthermore, given that required parental permission for adolescents to become donors

was found to be a considerable practical factor decreasing organ donation rates in

potentially willing adolescents, health care policy specific to granting autonomy to

adolescents regarding the decision to become a donor could be advanced. DMV factors

must also be addressed. Psychologists should work with personnel to increase motivation

and memory for making donor card requests and help to design highly salient, attractive

informational materials to draw attention to the ability of individuals to sign organ donor

cards while at the DMV.









Finally, the results provided in the current study are a substantial contribution to

the existing literature on adolescents and organ donation. As demonstrated in the

available literature, very little was previously known about any aspect of organ donation

with the adolescent population. This study is the first to provide specific information

about attitudes, knowledge, and communications regarding posthumous organ donation in

a community sample of U.S. adolescents. In addition, by focusing specifically on

adolescents obtaining their driver's license, these factors were assessed at a very

important point in time, when the initial commitment regarding one's donor status is

likely to be made. Thus, the data allow for much more accurately informed campaigns to

increase adolescent organ donation in very practical yet powerful ways.

Study Limitations

Despite the many strengths of the current study, several weaknesses should be

considered as they may limit the interpretation of our findings. First, self-selection bias

may have occurred which would call into question the external validity and limit the

generalizability of our findings. Specifically, 18% of those asked to participate refused

and an additional 29% agreed to participate but returned incomplete surveys yielding a

total nonparticipation rate of 47% In addition, African-Americans and individuals of a

religious background other than Catholic, Protestant or Jewish were significantly more

likely to refuse participation or turn in incomplete surveys. Those with lower incomes

were also significantly less likely to complete the survey. This potential bias may have

resulted in a participant group that was predisposed to having more positive attitudes

toward organ donation. However, differences in participation rates can also be explained

by previously discussed cultural differences in orientation toward organ donation.









Furthermore, people may have declined or handed in an incomplete survey because of the

fact that they were unable to read well, their child's license had been processed and they

wanted to leave the hectic DMV environment, and/or the fact that the survey was rather

long taking participants 10-15 minutes to complete. We also suspect that another

possible misconception was that by filling out the survey, people were agreeing to

become organ donors. Anecdotally, several people also refused because they were not in

the mood to think about such a "morbid" topic given they had just passed their driving

exam. The most commonly reported reason for refusal was lack of time. These reasons

for refusal suggest the lack of a true bias.

A second potential example of selection bias is the fact that the second

discriminant analysis could only be computed using participants who had discussed

donation so that ratings of the quality of the discussion were available. This reduction in

sample size for the second analysis could potentially have had a major influence on the

power of the analysis. Thus, the changes in variable loadings may be due to using a

selective sample of participants and because of differences in power. The fact that nature

of organ donation discussions became the most important variable in the discriminant

function and that other changes in order of variable importance were observed must be

cautiously interpreted as the decrease in power may have made it more difficult for the

contribution of other variables in predicting donor status to be detected. Furthermore,

given that the results are based on a special subset of participants, the role of the

independent variables in predicting donor status is not as generalizable as the

discriminant function based on the entire sample. Thus, the nature of communications

regarding organ donation may not be the most important factor for all adolescents









contemplating their donor status.

A third limitation of the current study was the unequal rate of donors versus

nondonors in the sample. Although techniques to account for this difference were used in

computing the discriminant analysis, the larger group (nondonors) maintained much more

accurate classification rates than did the smaller group (donors). This limits the ability of

our independent variables to describe the donor population. However, as a main purpose

of this study was to profile nondonors to determine barriers to donation which need to be

addressed, the high classification accuracy of nondonors provides information that is still

extremely useful. Furthermore, the overall classification rates for the discriminant

function surpassed all criteria, suggesting that the variables did an adequate job of

predicting group membership, despite classification inaccuracies created by unequal

sample sizes.

A fourth limitation to consider in interpreting the results are the many

demographic variables on which participants were found to differ significantly in organ

donation attitudes, knowledge, and communications. The internal validity of our study is

called into question if demographic differences account for donor status rather than the

constructs of interest. While these differences were highlighted and consistent with

previous literature, their contribution to predicting donor status could not be directly

assessed because only continuous variables could be used as predictors in discriminant

analysis and adding more variables to the analysis would have reduced power. Although

demographic differences are described in detail, the extent to which these variables

account for donor status is unknown and must be considered in developing a profile of

donors versus nondonors from the discriminant analysis. However, it is important to note









again that donor status did not differ by ethnicity, suggesting that this variable would not

have significantly helped to classify donors versus nondonors.

A final limitation to consider is that the variables of organ donation attitudes,

knowledge, and communication were found to be correlated. The relationship between

these variables suggests a possible violation of the assumptions required for discriminant

analysis. In addition, the potential multicollinearity of these variables could have led the

individual contribution of each variable to donor status to be obscured by its relationship

with the most potent variable in each of discriminant functions that was computed.

Although this issue could affect the interpretation of the results, statistics checking for

violations of assumptions in the discriminant analyses were not significant, suggesting

that this was not a problem, and the analysis itself is quite robust to the violation of the

assumption of independence between the predictor variables (Grimm & Yarnold, 1995).

Future Directions for Organ Donation Research with Adolescents

Future research in the area of adolescent organ donation could use the data

available in the current study to design appropriate interventions to increase donation

rates. As it is regular practice with discriminant analysis, a first step might be to use to

the discriminant functions provided on a new sample of individuals to further validate

their predictive accuracy. This would ensure that the profiles of donors versus nondonors

can be relied upon to create interventions that truly address variables acting as barriers to

donation. Once interventions have been designed based on the needs of adolescent

nondonors, experimental methods should be used to compare control and intervention

groups to determine the influence of tailored interventions on actual donation rates.

Community samples should be used if possible to maximize the ability of findings to be









generalized and used with confidence in broader campaigns.

Tailoring our recommendations for future research from the findings of the

current study, the interventions aimed at increasing adolescent organ donation must be

multifaceted and deal with each of the primary populations involved in the adolescent's

final decision regarding donation. First, since adolescents' positive attitude about organ

donation was the most important predictor of donor status, factors influencing positive

attitudes should be directly addressed. As a relationship between knowledge and attitudes

was indicated, it will be important to design an intervention that raises adolescents'

awareness about issues such as how death is determined, the process of becoming an

organ donor, religious support for organ donation, and discussing wishes with next of kin

regarding donation preferences. Our data also indicate that adolescent males, from

families with lower incomes and education levels, might be the most important group to

target in terms of increasing awareness of and creating positive attitudes about organ

donation.

Second, as parental attitudes and positive communications between parents and

adolescents regarding organ donation were also predictive of donor status, interventions

should also work to improve parental knowledge about organ donation. Greater parental

knowledge might lead to more positive parental attitudes which may then be shared with

adolescents. Interventions must also be designed to increase the likelihood of parental

communications about positive attitudes toward organ donation, while being careful to

teach parents not to force their views upon their child so that the experience will be a

pleasant one. The information that is most appropriate for the parent to discuss with an

adolescent and how to carry out the conversation should be provided so that the









adolescent can truly benefit from it. Since data indicate that most parents obtain

information about organ donation from the media, working through this medium might be

most efficient. Testing the efficacy of interventions designed for other mediums might

also be a good future direction for research in order to determine if media presentations

are truly the most influential.

Third, future research should obtain more detailed information about the donor

request process at the DMV and factors contributing to the low rate of donation requests.

Much work has been done to understand donation requests made to families of deceased

potential donors, but little is known about what motivates DMV personnel to discuss

donation with clients. Particular attention should be paid to the perceived hassle of

needing parents to cosign with adolescents so that this barrier to donation could be

addressed either through procedural changes or policy changes giving adolescents the

right to make autonomous decisions about organ donation. In relation to this matter,

future studies could assess public opinion regarding support for and confidence in

adolescent independence to make donor status decisions. Interventions testing some type

of reward system for recruiting donors, such as public recognition, might also prove to be

an innovative approach to increasing donor rates through the DMV.

While our research has answered some pivotal questions about adolescents and

organ donation, research in this area is truly in its infancy. Psychologists are in a unique

position to answer the remaining questions about adolescents and organ donation and can

then provide sound interventions based on empirical data. In this manner, Psychology

can have a significant influence on the number of available donors and lessen the ever-

widening difference between the supply and demand for viable organs, particularly by






79


working with the adolescent population, from which a great amount of donor organs

could be obtained. In addition, psychologists can use research to address barriers to

donation on all levels including at the level of the individual donor, the family, the

community, and in public policies affecting organ donation. Seemingly, until another life

saving alternative has come to replace to miracle of organ transplantation, we can and

should continue to make a substantial contribution to improving the organ donation

process and thereby, improving the lives of countless others.
















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APPENDIX A

ORGAN DONATION RESEARCH QUESTIONNAIRE

Please answer the following questions:

Last 4 Digits of Social Security Number: _

Age in Years:

Gender: 0 Male 0 Female

Education: 0 0-8h Grade 0 9h Grade 0 10 Grade
(Check one)


Q Some High School

0 Some College

0 Completed 4yr Degree

U M.D.


Sub. #


S11"h Grade 02 12b Grade


0 Completed High School

0 Completed 2yr Degree

Q M.A./M.S. U Ph.D.

0 Other


Marital
Status: Q Single 0 Married 0 Divorced ISeparated
(Check one)
Q Widowed

Occupational
Status: U Employed 0 Unemployed Q Disability Q Retired
(Check one)

Estimated Family
Annual Income: $


Ethnicity: 0 Caucasian U African-American OHispanic/Latino

0 Asian 0 Native American Q Other (specify)


Religious
Denomination: 0 Protestant 0 Catholic 0 Jewish

0 None 0 Other (please specify)
















APPENDIX B

Attitudes Towards Organ Donation

Given below are statements of peoples beliefs about organ donation at the time of death.
Please read each statement and decide the extent to which you agree or disagree with it.
Indicate the extent of your agreement or disagreement with a statement by selecting one
of the following:
Agree Strongly +3
Agree +2
Agree Slightly +1
Disagree Slightly -1
Disagree -2
Disagree Strongly -3
For example if you agree strongly, you would write +3 in the margin to the left of the
statement, but if you disagree with it a little you would put -1.

1. A person willing to donate is almost a hero.

2. Organ donation leaves the body disfigured.

3. Donating a body part would enable that part of myself to remain alive
after my death.

4. Organ donors cannot control which organs will be taken even when
specified in advance.

5. An intact body is needed in the Life Hearafter.

6. To donate one's organs after death is an act of charity.

7. Organ donation interferes with and open-casket funeral and burial
services.

8. By agreeing to donate organs at death one sets a good example for other to
follow.

9. Deciding to donate one's organs at death adds extra meaning to life.






87



Agree Strongly +3
Agree +2
Agree Slightly +1
Disagree Slightly -1
Disagree -2
Disagree Strongly -3

10. Other members of my family would object to me signing an organ donor
card.

11. Organ donation endows death with more meaning and worth.

12. Transplanting organs is against God's will.

13. Pledging organs at death is a highly moral act.

14. Medical school researchers who remove organs do not treat the
deceased body in a dignified manner.

15. Pledging organs at death makes one more respected and admired by
family and friends.

16. Preparing to become an organ donor brings to mind unpleasant thoughts
of my own death.

17. Extraordinary medical techniques will not be used to save the life of an
organ donor.

18. Organ donation is a way of honoring God.

19. Organ donation is a way to atone for past wrong-doings.

20. A person will be less likely to receive adequate medical care after
signing an organ donor card.

21. There is a good chance that doctors will be more likely to
prematurely declare the death of an organ donor.

22. Hearing testimonials of people whose lives were saved after the receipt of
an organ make me think about the importance of donating my organs after
death.

23. Organ donation should not even be considered because the body is sacred
sacred and has religious meaning, even after death.






88



Agree Strongly +3
Agree +2
Agree Slightly +1
Disagree Slightly -1
Disagree -2
Disagree Strongly -3

24. Willing organs at death is a way of putting some parts of the body to
beneficial use.

25. The surest way to bring about my own death is to make plans for it like
signing an organ donor card.

26. The donor who offers a part of his or her body for transplantation is
making and inestimable precious gift.

27. It is unnatural to prolong life with body replacements.

28. People have a moral responsibility to donate some of their body parts to
people in need.

29. A donor's death will be met by pleasure rather than vigorous medical
treatment by physicians.

30. By agreeing to donate my organ after death, I am giving some people hope
for survival.

31. Pledging my organs upon my death makes me feel uncomfortable.

32. Organ donors are special people.

33. Organ donation benefits the whole of humanity.

34. When I die, I want my whole body to die with me.

35. A person who intends to donate their body parts at death increases the
likelihood that he or she will be pronounced dead even though one is
still alive.

36. Life is much too valuable to be cut short by a bad heart or kidneys
especially when organ donation can help solve the problem.

37. By signing an organ donor card, doctors might do something to me
before I'm really dead.









Agree Strongly +3
Agree +2
Agree Slightly +1
Disagree Slightly -1
Disagree -2
Disagree Strongly -3

38. A person with someone else's heart, eyes, kidneys, etc. is not the same
person.

39. By donating a body part after death, I could keep another person living.

40. The thought of my body being cut up or taken apart after I'm gone makes
me feel uneasy.

41. By donating an organ at death, one can offer someone a better chance of
being cured.

42. Even if special precautions are taken to protect the life of an organ donor,
there is still a chance that their life will be taken to save the life of a rich or
important person.

43. Pledging to donate an organ after my death would make me feel proud of
myself.

44. When I die, I want to be buried whole and with all my original parts.

45. It is a shame to deny a person the organs he or she needs to keep the body
functioning.

46. Pledging one's organs is a true and unselfish gift.

















APPENDIX C


Organ Donation Knowledge Questionnaire

Each of the following true/false questions concerns some fact about organ donation or the act of
becoming an organ donor. All questions pertain to the donation of organs after one's death and
exclude blood donation and donation of a single kidney by a living donor. For each question
there is a single correct answer. Please answer all questions by circling either T for True or F for
False.

T F 1. Under the Uniform Anatomical Gift Act, any mentally competent person, 18 years of
age or older, can become a potential organ donor by signing a donor card in the
presence of 2 witnesses who also sign the card. Those under 18 must get parental
consent.

T F 2. Once signed, an organ donation card is irrevocable (can't be changed)

T F 3. Almost all Western religious groups support organ donation

T F 4. Before a donor's organs can be removed, a physician must certify that the potential
donor's heart has ceased to function (beat) and all pulmonary (breathing) activity has
ceased.

T F 5. The procedures necessary to remove a donor's organs often make it impossible to
have an open casket funeral (due to disfigurement of the body)

T F 6. The donor's family is not responsible for the hospital and surgery costs for removing,
preserving, and transporting the donor's organs

T F 7. It is considered unethical for the same physician to have primary responsibility for the
care of both the organ donor and organ donee

T F 8. Anyone over the age of 40 is not acceptable as an organ donor

T F 9. A benefit of donating organs is that, if requested, it is often possible to get sufficient
compensation to offset the cost of burial

T F 10. Under the Uniform Anatomical Gift Act, your wish to donate your own organs,
properly documented by an organ donor card (on license) takes legal precedence over
the wishes of your next of kin (parents)

T F 11. For some types of organ transplants it is less expensive to do the transplant than
to provide terminal care for the patient











T F 12. A physician is legally allowed to donate the organs of a patient under his/her care
who has died without permission from the patient's next of kin (such as parents)

T F 13. For most organs, demand is significantly greater than supply

T F 14. Large sample surveys, such as Gallup, show that the majority of Americans support,
in principle, the concept of organ donation

T F 15. If death occurs in a hospital, the potential donor can be virtually certain that his/her
organs will be transplanted

T F 16. The process of organ donation generally does not result in any significant delay in
normal funeral arrangements

T F 17. Brain death occurs when there is irreversible cessation of all functions of the
entire brain, including the brain stem

T F 18. A majority of states have "presumed consent" laws that say that a deceased person
has given consent to have his/her organs removed for purposes of transplantation
unless a written declaration to the contrary exists

T F 19. For an organ donor card to be valid, a copy must be filed with the U.S. department of
health and human services

T F 20. The 'ideal' donor is a young adult who has died of a head injury

T F 21. Organ donors tend to come, relative to the size of the population, equally from all
racial and socioeconomic groups.
















APPENDIX D


ADDITIONAL QUESTIONS (Adolescent Version):


1. How willing are you to be an organ donor? (Circle one)


3
Somewhat Willing


5
Very Willing


2. While at the DMV, were you asked if you wanted to become an organ donor?
U YES U NO
2a. Did you become a donor and have "organ donor" placed on your driver's license?
U YES Q NO
2b. Did you want to become a donor, but couldn't because your parents wouldn't let you?
Q YES U NO

3. How often have you discussed organ donation with your parentss?
Q Never Once Q Twice Q More than Twice (Write # of times__
IF NEVER, SKIP TO QUESTION #7

4. IF you answered once, twice, or more than twice #3, with which parents) did you discuss
organ donation?: U Mother 11 Father 1 Step-mother 1 Step-father
U Other (Specify)

4a. How would you rate the quality of your discussion with your parents) about organ
donation? The experience was...? (Circle one)

1 2 3 4 5 6 7
Very Negative Neutral Very Positive

4b. I discussed organ donation with my parentss:
U At the DMV when I was asked about becoming a donor
Q Prior to going to the DMV

5. IF you answered once, twice or more than twice to #3,
Who started the conversation about organ donation?

Q Self 0 Parent Q Other


6. Had you made a decision about being an organ donor before talking to your parentss?
O YES O NO


1
Not willing
At All