Advances in Consumer Research Volume 14, 1987 Pages 331-334
PSYCHOLOGICAL FACTORS INFLUENCING DECISIONS TO DONATE ORGANS
Pat McIntyre, Kansas State University
Mark A. Barnett, Kansas State University
Richard J. Harris, Kansas State University
James Shanteau, Kansas State University
John Skowronski, Kansas State University
Michael Klassen, Kansas State University
Previous research on organ donation has suggested that, although most people are aware of organ donation, many are unwilling to consider donating organs. The present study explored several factors related to people's willingness to donate. In addition- this study also examined donors' and nondonors' knowledge, awareness and attitudes toward organ donation. The results supported earlier findings that people are generally aware of organ donation. Also, donor/nondonor differences were found in: 1) general attitudes toward organ donation, 2) beliefs concerning the motivation to donate or not donate, and 3) attitudes toward the role of the next-of-kin in the organ donation decision. Implications of these results for increasing organ donation are discussed.
There is a great demand for human organs to be used for transplantation. The demand is so great that it sometimes exceeds the supply of organs by multiples of hundreds. Thukral and Cummins (1986), for instance, state that in 1983 only 172 of nearly 14,000 patients waiting for hearts received a transplant. Similarly extreme supply/demand ratios exist for other transplantable organs such as livers, lungs, pancreases kidneys, corneas, bone marrow, and skin. This research project was designed to investigate individuals' knowledge, perceptions, motivations, and attitudes behind the decision to become an organ donor.
There are several reasons for the high demand for transplantable organs: (1) The success and longevity of transplants has increased due to advances in surgical procedures, tissue typing techniques, and the development of new immunosuppressive drugs (Caplan 1984); (2) A high proportion of end-stage diseases that cause individual organs to be incurable thus making transplantation the only remaining option (Overcast et al. 1984); (3) The desire on the part of many patients to improve the quality and duration of their life through a transplant (Clark et al. 1983).
According to Caplan (1983), American courts since the 1950's have emphasized voluntarism and informed consent as guidelines to govern the procurement of organs. The emphasis on "voluntarism" changed to "encouraged voluntarism'- with the passage of the Uniform Anatomical Gift Act in 1973. This act made it legal for people to donate organs through the use of donor cards or living wills; it also allowed next-of-kin to make donations for relatives who had not indicated a prior unwillingness to donate organs.
The intent of the Uniform Anatomical Gift Act was to bring the supply of organs closer to the demand. Unfortunately, the shortage is even worse today. Brams (1977) attributes the lack of transplantable organs to two causes: (1) The public's lack of knowledge about the organ donor program; (2) An unwillingness by many people to consider donating an organ even when all the facts are known.
Empirical support for these causes is mixed at best. In regard to the first; several studies have reported that most people are aware of organ donation. A Gallup Poll (1983) found that 93% of a nationally representative sample had heard or read something about organ transplants. Similarly, Mannien and Evans (1985) reported that 93.7% of their subjects knew about organ transplantation and 69.1% had heard about or had received information on organ donation. These earlier studies, however, did not investigate the extent or type of knowledge available. Thus, although it does appear that most people know something about organ donation, more information is needed about what they do know.
Several empirical studies provide indirect evidence on the second cause cited by Brams (1977) -- an unwillingness to consider donation, even when the person is knowledgeable about transplantation. Prottas (1983) reported in a 1975 Los Angeles survey that support for donation dropped 21% when a specific organ was mentioned. In addition, the Gallup Poll (1983) found that 72% of those aware of organ transplants were very likely to give permission to have the kidney of a loved one donated; this value dropped to 50% for donation of their own child's kidneys and to 24% for donation of their own kidney after death. Prottas (1983) argued that a deterioration of support is seen as one moves from abstract support for the concept of donation to more concrete and personal behavioral intentions. The reasons for this deterioration. however. have yet to be explored.
In order to increase the supply of organs, additional research is needed to understand the reasons why people decide to or not to donate organs. Therefore, one of the main purposes of this study was to determine what factors relate to a willingness to donate organs for transplantation.
Another purpose of this research was to segment subjects by their willingness to donate. The goal was to determine if there are differences between donors and nondonors on demographic and psychographic variables (e.g., sex, age, religion. knowledge, and attitudes). This would allow construction of a profile of donors and nondonors, a step suggested by Koop (1983).
Volunteers were solicited from General Psychology classes at Kansas State University to participate in an experiment on "attitudes toward organ donation." Sixty-eight men and sixty-nine women participated. The subjects filled out, at their own rate, a questionnaire dealing with organ donation. Most required between 30 and 40 minutes to complete the form.
Although psychology students are a nonrepresentative sample, they are an ideal target population for donation. They are at an age at which their organs are the greatest value for transplantation. In addition, they are more likely to engage in activities which place them at risk of fatal accidents. Thus, students represent an appropriate sample for research on organ donation.
An eight-page Organ Donation Biodemographic Questionnaire" was developed. It included the following sections (in order):
(1) Demographic Information. The initial questions assessed general demographic information such as age, sex, educational level, religious affiliation, and income.
(2) Awareness of Organ Donation. Subjects were questioned about their awareness of organ donation and their knowledge of organ donor cards. In addition, they were asked if they had signed the organ donor permission on their driver's license; if not, they were asked if they would be willing to do so.
(3) Attitudes Toward Organ Donation. Using a seven-point scale from 'strongly disagree" to strongly agree," subjects were asked questions about the perceived need for organs, possible effects of advertising, anticipated final use of organs (transplantation vs. research), and the perceived significance of the contribution made by donors.
(4) Motivations for Donating. Using a seven-point scale from "not important" to "extremely important," subjects were questioned about possible motivations for donating, e.g., altruism, increased self-esteem, and helping the cause of science.
(5) Motivations for Not Donating. Using a seven-point scale from "not important" to "extremely important,' subjects were asked about reasons for not donation, e.g., religious concerns, fear of premature organ removal, and desire to keep the body intact.
(6) Role of Next-of-Kin. Based on a seven-point scale of strongly disagree" to "strongly agree, subjects rated statements concerning the part that next-of-kin play in organ donation. They were asked about their perceptions of the relationship between signing an organ donor card, the next-of-kin's wishes, and doctors' efforts to encourage donation.
(7) Religious Attitudes. Using a seven-point scale from disagree strongly" to "agree strongly," subjects were asked about the role of their religious leader and the support of their religious community in their donation decision.
The questionnaire also contained some additional sections which are not relevant to the results reported in this paper.
RESULTS AND DISCUSSION
The analysis of the results was divided into two sections. The first concerns knowledge, awareness, and attitudes toward organ donation. The second concerns differences between donors and nondonors. The findings and implications for each of these issues will be considered in turn.
Knowledge, Awareness and Attitudes
Relatively few subjects (13.1%) had signed a donor card or the relevant section of their driver's license. This figure is somewhat lover than rates reported previously (Overcast et al. 1984). Many more subjects (37.2%) indicated that they would be willing to sign if they "were asked to do so." Apparently, many individuals do not perceive the organ donor portion of their driver's license (or organ donor cards) as a specific request to donate. Perhaps such a request would be more effective if it came at a more personal level.
The low donor rate cannot be attributed to lack of knowledge. A large majority had heard about organ donation (99.3%), knew what an organ donor card was (78.1%), and agreed with the statement "there are thousands of people in the U.S. who are waiting to receive donated organs" (M - 6.07 on a 7-point scale).
When asked about reasons for donating, subjects' responses reflected the general belief that other-oriented reasons (e.g., 'to help others") were more important motivators than either religious or self-oriented reasons (e.g., 'to encourage others to remember me as a good and caring person'). This is consistent with prior surveys and case studies indicating that expressed motives for donating are primarily other-oriented and altruistic (Cleveland 1975a, 1975b; Feller and Marshall 1981; Moores et al. 1976; Prottas 1983).
When asked about reasons for not donating, greatest importance was attached to a concern that a doctor may "declare death prematurely for the sole purpose of obtaining my organs" (M = 4.29 on a 7-point scale). Similarly, Prottas (1983) reported that "the most commonly expressed fear . . . is that agreeing to become a donor would negatively affect the treatment one receives in a hospital" (p. 290).
Most subjects expected their next-of-kin to go along I with their expressed desire to donate (72.3%) or not donate (83.2%) organs upon their death. An interesting pattern emerged when subjects were asked to consider their next-of-kin's decision if their own (i.e., the subject's) wishes were unknown. Under such circumstances, 19.0% expected their next-of-kin would give permission for donation; 48.2% expected that they would not. Nearly a third of the subjects indicated that they did not know what the decision of their i next-of-kin would be. This suggests that many subjects are unaware of their family's feeling about organ donation.
Perhaps subjects do not perceive any real need to discuss organ donation with family members: they generally agreed that "if I indicated on the back of my driver's license or donor card that I wanted to donate my organs, my next-of-kin cannot legally refuse my wish" (M = 4.98). In fact, the next-of-kin are always asked t to give legal permission (Overcast et al. 1984). The apparent lack of communication among family members about organ donation deserves further research.
Finally, subjects believe their religious leaders and religious community would support their decision to donate. This was not, however, very important in their decision to donate. Although there was no differences between subjects of different Christian denominations, nonreligious subjects did rate religious reasons for donating and not donating as less important.
Donors vs. Nondonors
A major purpose of this study was to assess attitudinal differences between subjects who were willing to sign an organ donor card and those who were not. Because only 18 out of 137 subjects indicated that they had signed such a card, the 44 additional subjects who indicated that they would be willing to do so were included in the donor group. The group of "nondonors" (N = 75) included those who either said they were unwilling to sign (N = 8) or were not sure (N = 67).
Donors and nondonors were found to differ in some of their (1) general attitudes toward organ donation, (2) beliefs concerning the motivation to donate and not donate, and (3) attitudes toward the role of the next-of-kin in the organ donation decision.
Donors, in comparison with nondonors, agreed more strongly with the statements (1) "There are thousands of people in the U.S. waiting to receive donated organs' [Ms - 6.32 and 5.86, respectively, F (1,133) - 4.35, p (.05] and (2) "An organ donor has the potential to save many lives by donating all of his/her organs [Ms - 6.21 and 5.61, respectively, F (1,133) - 6.82, p ( .05].
Donors and nondonors were found to differ more in their reasons for not donating than in their reasons for donating. Donors and nondonors were significantly different in their importance ratings on 6 of the 10 potential reasons for not donating listed on the survey (see Table 1). On the other hand, the two groups were found to differ on only one potential reason for donating: Donors rated "To help the cause of science' as a more important reason for donating (M - 4.73) than did nondonors (M=3.84), F (1,133)= 8.07, 2 <.01. Thus, whereas donors and nondonors appear not to differ markedly in their evaluation of the motivation for donating, nondonors may be especially "well-armed" to explain (or rationalize) their decisions not to donate.
UNUILLINGNESS TO DONATE ORGANS (DONORS VS. NONDONORS)
In general, nondonors were found to have more negative attitudes than donors about the role of the next-of-kin in the organ donation process (see Table 2). For example, nondonors indicated that they would be less likely than donors to donate (or consider donating) the organs of a loved one upon his or her death. Furthermore, nondonors were less likely than donors to indicate that donating the organs of a loved one would bring them personal comfort and solace during their time of grief.
NEXT-OF-KIN ATTITUDES (DONORS VS. NONDONORS)
This survey provides preliminary insights into (1) factors which encourage/discourage organ donation and (2) differences between donors and nondonors. The implications of present results for each of these issues will be explored below.
The reasons cited for donating appear consistent with global altruistic concerns, e.g., helping others. Certainly, the reasons cited by subjects "sound good'- and are easily justifiable. Such self reports, however, may reflect a tendency to provide socially desirable responses (for a further discussion of this issue, see Barnett et al. 1987).
In general, subjects cited more focused reasons for not donating. Specifically, there was a consistent concern that donors would receive less-than-adequate medical care because of a desire to obtain their organs. Similarly, Prottas (1983) reported that people fear they "will not be adequately cared for in a hospital because someone will want them to die" to get their organs (p. 301). Whether this is a deep-seated fear or a surface excuse for not donating is unknown.
It is also worth considering some of the factors which were not viewed as important in the decision to donate. Although we had expected religious reasons to be central, at least for some subjects, religion was consistently unimportant. Similarly, the next-of-kin were seen as either playing an uncertain or an irrelevant role in organ donation; subjects appeared unaware of the necessity of obtaining legal permission from next of kin.
The fact that subjects held inappropriate beliefs about several facets of organ donation may be a cause of some concern. For instance, the fear about possible premature termination of medical care reflects a surprising mistrust in the medical community. Similarly, subjects' ignorance about the role of next-of-kin shows a clear lack of knowledge about the legalities of organ donation. Whether such misconceptions can be addressed through consumer "education", or whether more extensive measures are needed will require further analysis.
It is perhaps symptomatic of consumers' general state of ignorance that many subjects volunteered that they had learned a great deal from completing the questionnaire. In fact, the survey was designed to explore knowledge and opinions but not to provide feedback. Apparently, most people have thought so little about organ donation that even seemingly neutral questions prompt insight and analysis by respondents. The potential for inadvertently altering subjects views of donation by asking such questions may be a cause of some concern.
Donors vs. Nondonors
The differences in responses of donors and nondonors were often striking. One major source of difference reflected motivations for not donating. For instance, nondonors were more concerned about disfigurement and leaving the body intact than were donors. One implication of such findings is clear: Rather than focusing exclusively on the benefits of organ donation to the donor and recipient, messages to encourage donation should be constructed to dissuade individuals of their fears regarding the organ donation process. Thus, messages could directly address the concern that, following organ removal, the body will be disfigured and unpresentable in an open casket.
Another source of differences between donors and nondonors concerned the role of next-of-kin in donation. Donors generally felt more positively about what their next-of-kin would do or what they (as next-of-kin) would do with regard to donating organs. Nondonors, on the other hand, were more reluctant to see either themselves or others as next-of-kin make the decision to donate organs. Apparently, personal reservations about being an organ donor are readily translated into reservations about donating the organs of a loved one. The implication seems clear: Individuals interested in donating their organs upon death need to discuss their wishes with family members, especially with those who gill support and carry out their wishes.
It is worth noting that the differences observed between donors and nondonors were not as extreme as they might have been. In assigning subjects to the donor group, those who indicated they would be willing to sign a donor card, but had not in fact done so, were included along with those who had signed. Similarly, the large majority of the nondonor group were people who said they were 'not sure" they would sign. Presumably, a comparison of more strongly committed donors and nondonors would have produced even more pronounced differences.
The ability of our results to reveal major differences between donors and nondonors suggests the usefulness of this dichotomy. The attitudes, knowledge, and motivations of these two groups differ substantially and should be explored further. We are now in the process of investigating the sources of such differences, e.g., in the decision making process. The results of these analyses may be of particular value to social marketers and transplantation specialists in their efforts to encourage organ donation.
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