Abstract
Context:
Organ donation campaigns are maximized when promotional messages address salient issues among the intended audience. A diverse sample (N = 1573) was recruited to identify the reasons for (not) registering as an organ donor.
Objective:
Relying on an established coding scheme, an updated explanation for why individuals register (or not) as organ donors is provided. Moreover, registration trends with respect to race, biological sex, and age is presented.
Method:
Participants exiting Department of Motor Vehicle offices (N = 12) were surveyed to understand their reasons for registering and not registering as organ donors.
Results:
Benefits of donation followed by prior registration, rational arguments, and personal experiences represented nearly 90% of the coded responses for registering. Conversely, negative beliefs, decisional uncertainty, perceived disqualification, no reason, general fear/disgust, and lack of opportunity constituted nearly 90% of the coded responses for not registering as an organ donor. Whites and Latinx individuals were more likely to register as organ donors compared to African Americans. Participants in the lower (18-24) and upper (65+) age brackets had the lowest donor registration rates.
Conclusion:
Promotional efforts should continue to target younger and older audience segments with information about organ donation as well as African Americans. Results from the current study suggest emphasizing the benefits of organ donation as well as overcoming negative beliefs, decisional uncertainty, and perceived disqualifications.
Introduction
The need for posthumous organ donation in the United States greatly exceeds the available supply. 1,2 Despite near unanimous (95%) public support for organ donation, 3 to date only 54% of American adults are registered as organ or tissue donors in their respective state registries. 4 Efforts to increase enrollment in state donor registries are one effective strategy for increasing the supply of organs available for transplant. In particular, Department of Motor Vehicle (DMV) offices are a prime location for campaigns promoting donor enrollment given the sheer number of new potential donors that are asked by DMV clerks if they wish to be a registered organ donor. To date, campaigns to promote donor registration have been conducted at DMV locations in many states, including Michigan, 5 –7 Kentucky, 8 Florida, 9 Illinois, 10 West Virginia, 11 Massachusetts, 12 and New York. 13
Crucial to the design of effective donor registration campaigns is an understanding of the knowledge, attitudes, and beliefs of the target audience. 14 A large body of work 15 has examined sociocognitive determinants of organ donor registration. The literature on public beliefs surrounding organ donation, however, is limited in at least 2 primary ways. First, many studies examining organ donation determinants rely either primarily—or exclusively—on cross-sectional surveys with closed-ended items. This approach inherently lacks the rich depth that open-ended survey questions can provide. Second, as many states only require their residents to renew their license (assuming a good driving record) every 4, 6, or 8 years, participants’ responses in general may be biased due to faulty recollections (ie, participants are asked to recall their rationale for a behavior they engaged in years prior). In order to combat these limitations, a study conducted by Feeley and his associates 16 sought to categorize the reasons why New York State residents did (or did not) register as an organ donor. Perhaps most critically, they found that the number one reason for donation inaction was actually “no reason” (26.4%) at all, suggesting that participants may be more of a blank slate in regard to their organ donation beliefs than quantitative survey research may suggest. 16 Furthermore, the fact that religious conflict was mentioned less than 1% of the time as a rationale for not enrolling suggests that quantitative examination of this construct may perhaps paint a misleading picture as to the impact of this variable on donor inaction. In short, the findings from Feeley and colleagues 16 suggest potential pitfalls in our current understanding of the reasons driving individuals’ donation decisions. Further examination and replication of their insightful study with a diverse sample from a state with an established organ donor registry was warranted.
The purpose of the current investigation is 3-fold. First, the current study reports on formative research conducted to identify individuals’ reasons for (not) enrolling in their state donor registry. In particular, the data reported in the current study come from survey responses collected from participants exiting various DMV offices in Chicago, Illinois. This method allowed us to solicit participants’ responses within minutes of having made the decision to register as an organ donor or not. Second, considering that our data collection and analysis strategy mirrors earlier work conducted by Feeley and colleagues, 16 this allows us to compare and contrast our findings across 2 state populations. Third, the current investigation extends Feeley and colleagues 16 work by also examining the relationship between age, biological sex, and race on registration behavior.
Method
Following institutional review board approval, customers exiting DMV offices (N = 12) in Chicago, Illinois, were approached by a paid research assistant and asked whether they would complete a brief pen-and-paper survey. An effort was made to approach every person leaving the DMV who had completed a license registration or renewal. Customers who did not complete a license registration or renewal were not eligible to take the survey. To reduce response bias, the topic of organ donation was not mentioned during participant recruitment. Approximately 57.2% of the customers approached agreed to participate in the survey, leading to a total sample of 1573 participants (see Figure 1). Data were collected over a period of 16 weeks in the spring of 2017. The research assistant spent several hours per day at each DMV location. Multiple visits were made to each location and the hours of the day in which the researcher collected data were varied on each visit. No incentive was offered for study participation. The survey took approximately 5 minutes for participants to complete. Verbal consent was obtained from all individuals included in the study.
Flowchart of participant recruitment and participant breakdown.
For DMV customers who agreed to participate in the study, participants completed a single-page survey that asked them a variety of questions, including the purpose of their visit to the DMV, questions about their organ donor status, if they recalled seeing any promotional messages during their visit, questions about their interaction with DMV clerks, as well as demographic information. In addition, all participants were asked an open-ended question as to the rationale behind their decision to register (or not) as an organ donor.
Following data collection, open-ended responses (N = 873) regarding participants’ reasons for registering and for not registering as an organ donor were examined. To guide the interpretation of our data, we used a previously established coding system developed by Feeley and colleagues. 16 Two of the authors (first and second) independently coded the same 100 responses for participants’ reasons for registering as an organ donor, as well as the same 100 responses for why participants did not register (approximately 20% of the total responses). The coding scheme represented the data quite well for both reasons for and against registering, though we did elect to add 2 additional emerging categories (cues-to-action and religious support) to the coding scheme under reasons for donor registration. Initial coding with this revised scheme demonstrated adequate intercoder reliability for both reasons for registering (κ = .82; simple agreement = 0.92) and reasons for not registering (κ = .96; simple agreement = 0.97). All coding disagreements were resolved by discussion and consensus between the 2 coders. Following the establishment of intercoder reliability, the first and second authors split the remaining open-ended responses in half and independently coded the remaining responses according to the revised coding scheme. Following Feeley and colleagues, 16 if participants gave responses that could fit multiple categories, we coded only the first response reported. Given that participants’ responses were quite short, ranging from 1 to 18 words in length (mean [M] = 4.41, standard deviation [SD] = 2.78, median = 4), participants’ responses rarely fit more than 1 category.
Results
Participants
Participants (N = 1573) ranged in age from 15 to 98 (M = 41.05, SD = 18.10). Participants were mostly female (52.6%) and most had registered as an organ donor (57.5%). Participants identified their race/ethnicity as white (38.0%), followed by African American (30.1%), Latinx (21.7%), Asian (4.8%), multiracial (3.4%), or some other race/ethnicity (2.0%). A majority (873/1573, 55.5%) of participants provided an open-ended explanation for or against organ donation registration (see Figure 1).
Among those who provided an open-ended reason for their donation decision (N = 873), participants ranged in age from 15 to 91 years (M = 39.44, SD = 17.94). Participants who provided an open-ended reason were mostly female (50.2%) and slightly less than half (47.7%) had registered as an organ donor. Participants who provided a reason for their donation decision identified their race/ethnicity as white (35.8%), followed by African American (30.6%), Latinx (22.9%), Asian (5.1%), multiracial (3.5%), or some other race/ethnicity (2.1%). Thus, the demographics among participants who completed the open-ended question mirrored the larger sample as a whole, albeit being slightly more representative of nondonors than registered donors.
Reasons for Donor Registration
For those participants who reported registering as an organ donor (n = 415), the most commonly cited reason was perceived benefits of donation (n = 280, 67.5%). These responses included individuals emphasizing that they were registering for the benefit of others (“To save a life,” “To help others”), that they had positive thoughts toward donation (“I believe it is important”), or that donation is a good or right thing to do (“It is the right thing to do”). The second most cited reason for registering as an organ donor was prior registration/history of support for donation (n = 53, 12.8%, “I’ve always been one,” “I have been for years”). Third and fourth most cited reasons were rational arguments (n = 24, 5.8%), whereby individuals emphasized their lack of need for organs subsequent to death (“I’m not going to need them when I’m dead,” “Well if I can’t use them someone else should be able to”) and personal experiences with donation (n = 16, 3.9%, “My son died and donated his organs,” “My father was a heart transplant recipient”). These 4 categories comprised approximately 90% of the coded responses (see Table 1). Other less cited reasons for registration included organ donation cues-to-action (n = 4, 1.0%), which included references to promotional materials (poster, video) that individuals saw in the DMV (“The messaging was effective”), being unknown/unsure about why they registered (n = 4, 1.0%, “I have no idea”), and religious support (n = 2, 0.5%, “What would Jesus do?”). Several responses did not fall into any of the existing categories (n = 32, 7.7%, “N/A,” “Because I want to”).
Reasons for Registering as an Organ Donor (N = 415).
Abbreviation: DMV, Department of Motor Vehicles.
Reasons for Refraining From Registration
For those participants who reported refraining from registering as an organ donor (n = 458), the most commonly cited rationale was no desire/negative beliefs (n = 147, 32.1%), whereby participants indicated either they simply did not want to be a donor (“I don’t want to”) or they did not believe in organ donation (“I don’t believe in it”). The second most cited reason for not registering as a donor was decisional uncertainty (n = 82, 17.9%). Responses in this category included having not considered the topic of organ donation (“I haven’t thought about it yet”) or having yet to make up one’s mind about their donation decision (“I’m unsure right now, I’m still thinking about it”). The third and fourth most cited reasons were perceived disqualification (n = 63, 13.8%), through which participants cited perceived or known medical conditions (“I am a diabetic,” “My organs are in bad shape”) or age (“I am too old”) as precluding them from organ donation, and no reason (n = 39, 8.5%, “Not sure,” “I don’t know”). Other reasons for not registering included general fears/disgust (n = 25, 5.5%, “The process to obtain organ frightens me,” “I want my organs to be with me in the next world”), as well as lack of opportunity (n = 24, 5.2%, “I was not asked”) and religious conflict (n = 23, 5.0%, “Religious reasons”). Together, these 6 categories comprised approximately 88% of coded responses (see Table 2). Other infrequently cited reasons included the use of an alternative decision maker (n = 8, 1.7%, “My family knows my wishes”), lack of knowledge (n = 8, 1.7%, “I need to do more research”), distrust (n = 4, 0.9%, “The poor are allowed to die if the wealthy need organs”), and family disagreement (n = 2, 0.4%, “My wife forbid it”). Several responses did not fall into any of the existing categories (n = 33, 7.2%, “Prefer not to say,” “N/A”).
Reasons for Not Registering as an Organ Donor.a
aN = 458.
Differences in Donor Registration Rates
We employed a series of χ2 analyses to determine whether registration rates were associated with age, race, and biological sex (see Table 3). The χ2 analysis for biological sex was nonsignificant, χ2 (1, N = 1467) = 0.13, P > .05, indicating both men and women did not differ significantly in the rates at which they registered as organ donors. For race, differences among the 3 largest racial/ethnic groups in our data (white, African American, and Latinx) were examined. The χ2 analysis for race was significant, χ2 (2, N = 1365) = 34.05, P < .001. Specifically, registration rates among white (66.4%) and English-speaking Latinx (60.0%) participants were higher than registration rates among African American (48.5%) participants (P < .05). No other significant differences were observed for race. With respect to age, 5 age brackets based on US census division were created for analysis: (a) 18 to 24, (b) 25 to 34, (c) 35 to 44, (d) 45 to 64, and (e) 65+. The χ2 analysis for age was significant, χ2 (4, N = 1278) = 16.39, P < .01. Of note, participants in the lowest age bracket (18-24) had a significantly lower registration rate (47.2%) than all of the other age brackets (25-34 [60.5%], 35-44 [61.8%], 45-64 [62.7%], 65+ [55.9%]), P < .05. Participants age 65+ had significantly lower registration rates than the 3 central age brackets (25-34 [60.5%], 35-44 [61.8%], and 45-64 [62.7%]), P < .05. No other significant differences were observed for age.
Donor Registration Rates by Demographics.a
a Separate χ2 analyses were conducted for sex, age, and race. Within each column, superscripts indicate column proportions (z tests) that are significantly different at P < .05.
Discussion
Given the number of unnecessary deaths that occur each year due to low donor registration rates, the current study reports on data collected from DMV locations in Chicago, Illinois, to understand the reasons for and against registering as an organ donor. Following recent work by Feeley and colleagues, 16 we assessed individuals’ donation rationale immediately following their donation decision via pen-and-paper surveys. The findings reported here stand to extend Feeley and colleagues 16 earlier study by surveying individuals from Illinois, which compared to New York, has a more long-standing donor registry. In addition, the current study recruited a diverse sample with respect to age, race, and sex. Thus, our results speak to issues regarding the role of age, race, and sex in forecasting donor status. We discuss our findings below with an emphasis on the practical implications for donor registration campaigns.
The most commonly cited reason for refraining from donor registration in our sample was no desire/negative beliefs (32.1%). This stands in contrast to earlier work, 16 where no reason (30.7%) was found to be the most common barrier to donor registration. One likely explanation for this different pattern of findings is due to the difference in the number of registered donors in Illinois and New York. To date, only 28% of New Yorkers are registered organ donors, whereas 60% of Illinois residents have enrolled in their state registry. 4 In states where there is a large unregistered population (such as New York), this suggests a largely undecided yet positively inclined target audience of unregistered potential donors. In contrast, in states where the registration rates are much higher (as in Illinois), this suggests an unregistered potential donor population that is likely less positively inclined and more hardened in their opposition to donor recruitment efforts. In other words, nondonor’s rationale for not registering is not simply due to a lack of opportunity. Indeed, evidence from DMV-based campaigns supports this interpretation. The “tell us now” campaign in Michigan 5,6 was successful in recruiting donors at rates, 200%, 300%, and even 380% above baseline. The success of this campaign, however, is strongly tied to the initially low base rate of registered donors in Michigan at the beginning of the campaign (11%). More recent campaigns in states with higher donor designation shares 9,10 have failed to replicate the success of this campaign. Likewise, a meta-analysis suggests a 5% increase as a modest baseline for donor registration interventions. 14
One critical finding in the current study was that participants in the lowest (18-24) and highest (65+) age brackets had significantly lower registration rates than those aged 25 to 34, 35 to 44, and 45 to 64. Among participants aged 18 to 24 years who reported a reason for not registering, the most common response categories were no desire/negative beliefs (34.7%), followed by decisional uncertainty (16.8%), no reason (13.7%), and perceived lack of opportunity (10.5%). These latter 3 reasons suggest that overall this age cohort might be relatively unfamiliar with, yet open to, the topic of organ donation. However, given the higher number of statements fitting the no desire/negative category among individuals aged 18 to 24 years, future campaigns should also make a point to equip young potential donors with the facts, as well as informing them of the benefits of organ donation. Among participants aged 65 years and older who reported a reason for not registering, the most common response category was perceived disqualification (46.6%). The data from the current study contribute to a growing body of literature, 17 –19 suggesting that the greatest barrier for organ donation registration among mature adults is the myth that their age or physical health precludes them from registering as a donor. Clearly, future work would benefit by continuing to examine the beliefs of these 2 age cohorts in order to develop tailored message strategies for donor recruitment.
The results revealed that African American participants enrolled at a significantly lower rate (48.5%) than white (66.4%) and Latinx (60.0%) participants. This finding is consistent with evidence that many African Americans are recalcitrant to formally enroll in state donor registries. 3,20 –22 Indeed, a closer examination of the data demonstrated that among African Americans who reported a reason for not registering, responses were most commonly classified as no desire/negative beliefs (37.5%), followed by decisional uncertainty (15.5%), no reason (11.9%), and perceived disqualification (10.1%). Additional description of reasons for registering by sex, race, and age is available at https://osf.io/ujfy6/. Lower donor enrollment in the African American community is a critical issue, as African Americans account for almost one-third of those in need of an organ transplant and comprise only about 16% of organ donors. 2 Though race is not used as a determining factor in matching donors with recipients, low rates of donor enrollment directly translates to fewer African American patients becoming organ donors 18 as compatible blood types and tissues are more likely to be found among individuals with concordant racial backgrounds. Against our expectations, although distrust was cited among a few participants in the broader sample (0.9%), no African Americans in our sample reported distrust as a reason for refraining from registration. This finding is interesting as medical mistrust is a primary focus in scholarship examining barriers to organ donation in the African American community. 20,22
Limitations
Several limitations of the current study should be addressed. First, we recruited a large sample of more than 1500 DMV customers from Chicago, Illinois, and the surrounding collar counties. Thus, generalizing these findings to counties in suburban or rural parts of Illinois or to other states is not recommended. That being said, given that we recruited from every DMV location in Cook county, the largest (>5 million residents) and most diverse county in the state of Illinois, we feel confident that our results are representative of this specific location. Second, our results are somewhat limited by the fact that we required surveys to be completed in English. Though we had a relatively high recruitment rate (57.2%), clearly our surveys do not adequately assess the organ donation beliefs of non-English speakers. Third, customer surveys could have potentially been affected by selection bias. It is possible that altruistic individuals who may be more willing to complete a brief survey may also be more willing to register as an organ donor. Fourth, we also did not assess information regarding decision stability (whether or not the customers’ donation decision was consistent or inconsistent with prior registration status). Future work may benefit by examining the stability of individuals’ registration behavior over time. Finally, the method for our study differed from that of Feeley and colleagues 16 study in an important way. Namely, participants in our study completed a pen-and-paper survey themselves, versus a live interviewer transcribing participants’ responses. It is possible that this methodological difference may have led to subtle differences in participants’ responses, as individuals completing a pen-and-paper survey have more time to reflect on their donation decision, as well as greater anonymity in their response. This may provide an alternative explanation for why the most commonly cited reason for refraining from registration in our study was no desire/negative beliefs, whereas in Feeley and colleagues’ 16 study it was no reason.
Conclusion
The current study provides an extension and an update to earlier work by Feeley and colleagues 16 by examining the myriad reasons for and against registering as an organ donor. The diversity of sampled participants with respect to age, biological sex, and race extends this earlier work. Our findings offer clear message recommendations to organ donation practitioners seeking to promote donor registration. Additionally, our findings shed light into the reasons certain audience segments give for and against registering as organ donors. Together, we hope the current study offers clear and constructive implications that organ donation practitioners can apply in future promotional campaigns.
Supplemental Material
Supplemental Material, 7_18-0052_eTable_1_final_rpw - Illinois Department of Motor Vehicle Customers’ Reasons for (Not) Registering as an Organ Donor
Supplemental Material, 7_18-0052_eTable_1_final_rpw for Illinois Department of Motor Vehicle Customers’ Reasons for (Not) Registering as an Organ Donor by Tobias Reynolds-Tylus, Brian L. Quick, Andy J. King and Miriam Moore in Progress in Transplantation
Footnotes
Author Note
Andy J King is now affiliated to the Greenlee School of Journalism and Communication at Iowa State University.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded through the US Department of Health and Human Services, Health Resources and Services Administration (HRSA), and Division of Transplantation (DoT; D71HS26997).
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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