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Reasons of young Dutch Adults to consent or object to deceased organ donation registration and the impact of the consent system

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Master’s thesis:

Reasons of young Dutch Adults to consent or object to deceased organ donation registration and the impact of the consent system

Jana Vesely

Master’s programme Communication Science Graduate School of Communication

University of Amsterdam

Supervisor: Professor Bas van den Putte Student ID: 12356336

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Abstract

Many countries face long waiting lists for donor organs. To change this, The Netherlands has recently decided to change their consent system from explicit consent to presumed consent, which means that everyone who does not officially object is considered as potential donor. Because consent withdrawal rates have been increasing in recent years, this study was concerned with reasons why people become an organ donor (or not) and if these reasons change in light of the consent system. Therefore, a qualitative study including 19 interviews with young Dutch adults who are planning to be donors, object or are still undecided was conducted. Results revealed, first, that the decision about organ donation registration is determined by many variables. Barriers are more often related to individual affective reactions and concerns about family stress, while motivators tend to often be of altruistic nature considering both individuals and society. Second, while some of these variables in fact changed in light of the consent system, this did not strongly affect participants’ decisions (not) to be a donor. The system’s main contribution is that it requires action and facilitates becoming a donor for undecided participants. Implications of the findings, limitations and future directions are discussed and a recommendation for communication campaigns is given.

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Introduction

Shortage of donor organs is an important problem in many countries. In The Netherlands, more than one thousand people are on the waiting list for a new organ, while only approximately 750 patients can receive transplants every year (Nederlandse Transplantatie Stichting, n.d.-c). Still, around 150 patients per year die while waiting for a new organ. Waiting lists for organs which can only be donated posthumously, such as the lungs or the heart, are especially long. Hence, because of the dire need of donors, national health services run communication campaigns promoting organ donation registration in hopes of increasing people’s willingness to donate.

In order for an organ to be donated posthumously, the donor (prior to their death) or their relatives need to consent, which is regulated via different consent regulations, either via presumed consent (opt-out) or explicit consent (opt-in) (Janssen, Friele, & Gevers, 2004). While the opt-in rule requires people to actively sign up in order to be considered as a donor, the opt-out rule assumes everyone to agree unless they explicitly object. The Netherlands recently decided to change their consent regulation from opt-in to opt-out, to become applicable in summer 2020. As of 2019, almost 6,4 million people (around 42% of the population) were registered in the Dutch organ donor register (StatLine, 2019), which is around 600,000 registrations more than in 2014. However, rates of people withholding consent increased more than rates of people giving consent (see Figure 1). Evidently, increasing objection rates despite communication efforts to promote organ donation causes worry for health services aiming at keeping registered donor rates as high as possible and raises the question of why the increase occurred. On one hand, with the change of system making active refusal necessary, the topic’s salience as well as the motivation to unregister may be increased. On the other hand, the consent systems might have a differential impact on people’s decision such as increased perceived social pressure evoking reactance or a

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perceived loss of control in the opt-out system, both resulting in potentially higher objection rates.

Figure 1: Overview of donor registration rates in 2014 and 2019. Source: StatLine, 2019. *Numbers are preliminary.

Various studies have examined the determinants of donor registration decisions; common motivators are, for example, the wish to help people, while many affective barriers are concerned with discomfort regarding posthumous organ procurement (e.g. Morgan, Stephenson, Harrison, Afifi, & Long, 2008; Newton, 2011; Quick, Anker, Feeley, & Morgan, 2016; Scandroglio et al., 2011). However, no study has examined the impact of the consent system on people’s motives and determinants; most research has been conducted in opt-in countries, presumably because they need to rely more on marketing campaigns motivating people to voluntarily sign up. Additionally, many of the underlying studies are relatively old (Parisi & Katz, 1986; Sanner, 1994), however, considering societal developments, some factors (e.g. religious beliefs) might have lost their importance while new determinants may have developed. Generally, there is little research on determinants conducted in the Netherlands (Brug, Vugt, van Den Borne, Brouwers, & Hooff, 2000; Reubsaet, van den Borne, Brug, Pruyn, & van Hooff, 2001).

0 1000000 2000000 3000000 4000000 5000000 6000000 7000000

Total registered Unrestricted consent

Restricted consent

Next of kin No consent 2014 2019*

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Therefore, this study aims to investigate which determinants underlie donor registration decisions and whether the different consent systems have an impact on these determinants. The Netherlands provide an optimal environment for such research because the process of legislation change is currently in progress. This gives the opportunity to make a direct comparison between both consent systems. The leading research question for the current research is:

What are the underlying reasons for people to opt-in or opt-out of organ donorship, and are these reasons different in an opt-in compared to an opt-out system?

The study will answer this question by means of qualitative research which allows to explore in detail which determinants are prevalent in the Netherlands and what role the consent systems play without being restricted to predefined scales. By knowing what motivates or prevents people from registering as donor in the Netherlands and how the opt-out system interacts with these beliefs, communication campaigns can target such beliefs specifically in order to decrease and prevent increasing objection rates.

Literature review

On July 1st 2020, the new donor act will become applicable in the Netherlands. This law, which was passed in early 2018, determines that anyone who does not make an explicit choice in the donor register will be registered as having “no objection” to be a donor. Technically, this means that next-of-kin have to accept the deceased’s organs to be donated unless they can prove that the deceased objected to be a donor. The register offers three options:

 Yes, I give consent (with the possibility to restrict consent for specific organs)  No, I don’t give consent

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Albeit tentatively, opt-out systems are assumed to be associated with higher donor rates (Rithalia, McDaid, Suekarran, Myers, & Sowden, 2009). However, in Chile for example, individual as well as family refusal rates significantly increased after introducing the opt-out system (Domínguez & Rojas, 2013). Unfortunately, little research has examined the effect of the system on people’s motivation, but rather the potential effectiveness of the different system (Miller, Currie, & O’Carroll, 2019). Thus, this study will fill this gap. Nevertheless, the reasons why people chose (not) to be a donor have been subject to many studies; knowing these motivators and barriers underlying individuals’ behaviour is essential in order to design effective communication strategies to increase donor rates. In the following paragraphs, past research on these determinants will be discussed as well as the potential impact the consent systems might have on these determinants. To facilitate the use of words, talking of “donor registration” refers to being registered as donor, i.e. consenting in an opt-in and not withdrawing consent in an opt-out system, respectively.

Motivators and barriers of donor registration

Previous research has identified various underlying reasons of the decision to opt in or out of organ donorship, namely motivators and barriers, which will each be presented in the following paragraphs. In order to structure the number of determinants, they will be further organised into five dimensions which have been found to best represent their overarching characteristics. Thus, this study will first discuss this theoretical foundation. Within the motivators and barriers sections, each dimensions will be discussed separately; an overview of the resulting theoretical framework is found in Table 1.

Theoretical foundation. Many studies concerned with the determinants of donor registration are based on the theory of reasoned action (TRA) (Fishbein & Ajzen, 1975) or the theory of planned behaviour (TPB) (Ajzen, 1991). The TRA assumes that behaviour is directly predicted by intention which is determined by attitudes towards and subjective norms

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regarding the behaviour in question. The TPB extended the TRA by adding self-efficacy, i.e., the perceived control about enacting the behaviour, which is assumed to have an influence on both intentions and behaviour. All three variables of the TPB influencing intentions are determined by underlying beliefs. Importantly, although recent research defines attitudes as having cognitive and affective components, organ donation research often distinguishes between cognitive attitudes and differential affective determinants (Anker, Feeley, & Kim, 2010; Morgan et al., 2008); correspondingly, this study will treat attitude as cognitive determinant. Both models are highly cognitive, only acknowledging social influences but disregarding affective reasons, and have been proven to predict registration intentions and behaviour in various studies (Hyde & White, 2009; Nijkamp, Hollestelle, Zeegers, Borne, & Reubsaet, 2008; Wu & Tang, 2008). These findings underlie the five-dimensional structure, which will be extended with dimensions including other determinants found to be influential for the donor registration: cognitive, affective, social, moral, and self-image related determinants.

Cognitive determinants will be extendedly defined as determinants based on reasoning and logic in this study. However, they alone do not explain the low rates of registrations despite positive attitudes and intentions (Feeley, 2007). In fact, affective determinants based on feelings rather than logic have even been found to stronger impact donation behaviour and attitudes compared to cognitive variables (Morgan et al., 2008; Quick et al., 2016). Social influences in the TPB traditionally refer to subjective social norms, i.e., if one perceives social pressure from the close social environment (e.g., family or friends) to display the target behaviour. However, due to the variety of determinants identified, this study also includes societal norms as well as determinants which are related to the interaction with the social environment such as information exchange. Moral factors in this study are related to general principles of right or wrong behaviour. While they are often determined by

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society and often overlap with societal norms, moral norms are distinguished from social norms in this study by being of more fundamental and general nature. Finally, self-image related determinants refer to reactions to organ donor registration related to one’s personality and the evaluation of oneself. Indisputably, some of these factors may also be categorised as affective determinants, however, not all affective reactions are related to one’s self-image.

Notably, there is no consistent outcome variable throughout past research; studies measure determinants’ influence on intentions (Hyde & White, 2009), (past) behaviour (Morgan et al., 2008) willingness or even attitudes (Wakefield, Watts, Homewood, Meiser, & Siminoff, 2010).

Motivators of donor registration.

Cognitive motivators. Studies show that a more positive attitude is associated with

higher intentions to donate and more donor registrations (Hyde & White, 2009; Nijkamp et al., 2008; Park & Smith, 2007). In turn, other studies found attitude to only weakly predict behaviour (Morgan et al., 2008; Quick et al., 2016). Remarkably, although the TPB and the TRA define attitudes as related to the target behaviour, many studies have measured attitudes towards organ donation (Morgan et al., 2008; O’Carroll, Foster, McGeechan, Sandford, & Ferguson, 2011) instead of attitude towards registering as donor (Quick et al., 2016). Although in both cases an influence of attitudes was shown, no study has examined further if and how attitudes towards organ donation and donor registration differ from one another.

Having more knowledge about organ donation has generally found to be beneficial for registration. It was repeatedly shown that higher knowledge levels increase attitudes, intentions and behaviour (Miller et al., 2019; Nijkamp et al., 2008; Wakefield et al., 2010). However, the influence of knowledge seems to be weaker compared to attitudes (Morgan et al., 2008; Quick et al., 2016).

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Self-efficacy is somewhat understudied compared to other TPB variables, but results seem inconclusive. In two recent studies, self-efficacy was found to predict intentions (Hyde & White, 2009; Wang, 2011). Another recent study found self-efficacy to mediate the relationship between attitude and behaviour (Anker, Feeley, & Kim 2010). However, other studies have found self-efficacy either to become insignificant within the TPB when including religious beliefs and affect into the model, or to not be significant at all (Park & Smith, 2007; Rocheleau, 2013).

Table 1

Theoretical framework: Potential determinants of consent to donor registration

Dimension Motivators Barriers

Cognitive determinants - Positive attitude - High knowledge - High self-efficacy - Functional views - Negative attitude

- Insufficient (perceived) knowledge - Low self-efficacy

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Affective determinants

- Immortality - Death is not futile - Supporting religion

Body

- Illusion of lingering life - Disgust (ick-factor)

- Lack of respect/dignity for corpse - Loss of control over body

Fear of death - Uncomfortable - Jinxing

- Uncertainty about afterlife Religion/Spirituality

- More religious beliefs - Bodily integrity

- Prevention of funeral rituals - Unnatural

- Special meaning of organs/trait transference

Recipients

- Only certain people worth it Medical mistrust

- Taking organs too early - Validity of brain death Other

- Fear of black markets (illegal trading of one’s organs) Social determinants - High social/societal norms - Family discussion - Personal experience - Helps family

- Lower social norms

- Family distress due to mutilated body - Family not wanting person to donate - Negative information from environment - Negative media coverage

Moral determinants - Altruism - Reciprocity - Solidarity Self-image related determinants - Part of self-identity - Being a hero

Affective motivators. Affective motivators include perceived immortality due to the

feeling of surviving through the donor organs in the recipients as well as the perception that one’s death is not futile; both were shown to be associated with increased attitudes (Sanner, 2006). Finally, believing that one’s religion supports organ donation motivates to donate (Newton, 2011).

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Social motivators. Perceived social norms within the social environment were

repeatedly shown to exert a strong influence on registration intentions as well as behaviour (Nijkamp et al., 2008; Park & Smith, 2007; Wang, 2011). Besides, societal norms were shown to impact donation decision making as well (Park & Smith, 2007). Moreover, talking to family and friends about organ donation was found to improve attitudes as well as having personal experience with a recipient or someone in need of organs (Hyde & White, 2010; Scandroglio et al., 2011; Wakefield et al., 2010; Yin, Liu, Yan, & Liu, 2016). Being a donor was also seen to help one’s family after death by knowing that the deceased was able to help others (Hyde & White, 2010).

Moral motivators. The most frequently identified motivator is the altruistic principle

to help others, especially children, and to save lives (Hyde & White, 2009; Moloney & Walker, 2002; Newton, 2011; Sanner, 1994, Scandroglio et al., 2011). Besides, reciprocity is a motive; if one would take an organ if needed, one should also be willing to give (Newton, 2011). Some people even perceive organ donation as moral obligation (Scandroglio et al., 2011), in fact, moral norms were found to predict intentions to register (Hyde & White, 2009). On a societal level, donor registration is perceived as necessary contribution to society which is based on principles of solidarity (Scandroglio et al., 2011).

Self-image related motivators. The impact of donor registration on one’s self-image

has so far been understudied, although it seems logical that the “good” altruistic act of donor registration may have a beneficial impact on one’s self-image. One study showed that perceiving being a donor as important for one’s self-image to increase intentions to donate (Hyde & White, 2009). Moreover, being a donor is perceived as heroic by saving other people’s life after death (Parisi & Katz, 1986).

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Cognitive barriers. Correspondingly to the aforementioned motivators, lower

attitudes, self-efficacy and knowledge levels were (potentially) associated with more negative registration decision making (e.g. Nijkamp et al., 2008; Wakefield et al., 2010; Wang, 2011). Despite objective knowledge levels, the individual perception to have insufficient relevant knowledge and not knowing how to register one’s decision were found to be a barrier to donor registration and was associated with lower attitudes (Newton, 2011; Scandroglio et al., 2011; Wakefield et al., 2010)

Affective barriers. The main topics identified among various affective barriers are

related to the body, religion and spirituality, death, the medical profession and the recipients (Newton, 2011). One of the most common barriers is discomfort towards posthumous organ procurement in relation to one’s own body. This illusion of lingering life is often grounded in the inability to distinguish the corpse from the living body, leading, for instance, to fearing pain during organ removal (Newton, 2011; Parisi & Katz, 1986; Sanner, 1994). Other people experience disgust towards the idea of organ donation, the so-called ick-factor, and perceive organ procurement disharmonious with a dignified treatment of the corpse (Morgan et al., 2008; Sanner, 1994). Moreover, people perceive a loss of control over their body as an organ donor (Newton, 2011).

Further, people feel uncomfortable thinking or talking about their own death which is an obvious condition of being a (posthumous) organ donor (Newton, 2011; Wu & Tang, 2008). Some even fear that they are tempting fate when discussing death (the jinx-factor), which they feel may potentially lead to (early) death (Morgan et al., 2008). Also, uncertainty about what happens after death was reported as barrier (Hyde & White, 2010; Sanner, 2006).

Although religion can support or prevent donor registration depending on the interpretation of God’s will on the matter, several studies show that holding more religious beliefs is associated with lower attitudes, intentions and behaviours towards organ donation

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registration (Nijkamp et al., 2008; Scandroglio et al., 2011; Wakefield et al., 2010). Religious barriers are related to bodily integrity, i.e., the need to keep the body intact after death for a potential afterlife, and misconceptions about organ donation preventing specific funeral rituals (Morgan et al., 2008; Newton, 2011; Wakefield et al., 2010). Additionally, organ transplantations are perceived as unnatural (Sanner, 2006).

In spiritual views, certain organs, mainly the eyes and heart, are perceived to hold part of one’s personality; organ donation are thus presumed to transfer personal donor characteristics into the recipient (Newton, 2011; Sanner, 2006). Others want to donate their organs only to certain people such as patients with preconditions (as opposed to externally caused diseases such as liver failure due to excessive alcohol consume), members of one’s ethnic group, children or family (Hyde & White, 2010; Hyde, Wihardjo, & White, 2012; Williamson, Bigman, & Quick, 2018).

Further, mistrust of medical professionals, medical mistrust, constitutes a barrier to donor registration and is mainly concerned with the fear of doctors being more inclined to harvest organs instead of saving the donors’ lives (Morgan et al., 2008; Parisi & Katz, 1986; Quick et al., 2016; Sanner, 1994). Lastly, individuals were scared of their organs to be illegally sold on the black market (Hyde et al., 2012).

Studies found nondonors to hold more of these affective beliefs compared to donors; nevertheless, many are based on incorrect knowledge and misconceptions, e.g. regarding the possibility to have funerals (Hyde et al., 2012; Morgan et al., 2008; O’Carroll et al., 2011; Parisi & Katz, 1986). Moreover, affective barriers were found to stop people from singing up even if they felt like signing up was the right thing to do (Nizza, Britton, & Smith, 2016). Medical mistrust, the jinx- and ick-factors as well as bodily integrity have been studied most and were shown to reduce attitudes, willingness and behaviour, although bodily integrity and

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the ick-factor seem to be the most robust ones (Morgan et al., 2008; O’Carroll et al., 2011; Quick et al., 2016).

Social barriers. In accordance with the aforementioned motivators, lower perceived

norms and pressure from the social environment were associated with lower intentions (e.g. Park & Smith, 2007). Also, people tend to be opposed donor registration because they want to prevent their family experiencing distress when seeing their body mutilated through organ procurement (Hyde & White, 2010; Nizza et al., 2016).

In contrast to family discussion motivating donor registration, it is also possible to receive negative information from one’s social environment. If the family expressed the wish for their family members not to be donors, participants did not want to register in order to prevent family conflict (Hyde & White, 2010; Nizza et al., 2016). Moreover, African-Americans, who generally hold less positive attitudes toward donation, reported to obtain negative information from their close social environment which increased distrust towards organ donation (Williamson et al., 2018). These findings may indicate that social factors may support the decision to become a donor, however, only if the social environment in fact holds positive attitudes towards donor registration. Although this is rather broadly related to social factors, several studies showed that (often incorrect) media coverage in both news and entertainment influences people’s attitudes towards donation as well as donation behaviour negatively (Morgan, Movius, & Cody, 2009; Quick, Morgan, LaVoie, & Bosch, 2014; Scandroglio et al., 2011; Williamson et al., 2018).

Moral barriers. The opposite of a moral principle such as altruism would be for

example, in this study, egoism (i.e., the right thing to do is to care for oneself instead of others). However, such moral barriers were not previously identified in organ donor registration research and will thus be explored in the current study. Evidently, such principles

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are also subject to social norms and social desirability, therefore, it is questionable if participants would report such things genuinely.

Self-image related barriers. No barriers related to one’s self-image have been

identified in prior research and will consequently be explored in the current study. Motivators and barriers in light of the system change

As discussed above, many factors impact organ donation decision making. Although the two types of consent systems are widely debated, no study so far has examined if the registration systems impact people’s organ donation registration decision and if so, how. Especially with increasing rates of people withholding consent in the Netherlands in recent years, the possibility of the system influencing one’s decision arises. Naturally, the new system requires an active choice if nondonors want their wish to be respected or they will be registered as “no objection”, whereas remaining silent did not have any undesired consequences for nondonors’ in the previous system. Thus, the need to actively register one’s objection is likely to increase objection rates among those who wish not be donors. Moreover, unless personally confronted with it somehow, organ donation and thus donor registration is likely to remain a rather distant topic. Announcing the new system has assumingly increased the topic’s salience, causing people to form an opinion which may result in the decision not to consent. Contrarily, the new system may also increase awareness of the shortage of organ donors, which should increase the motivation to become a donor.

Additionally, certain determinants’ importance may change in light of the new system possibly decreasing individuals’ willingness to become a registered organ donor. One example is social pressure; the default of consenting to donation is likely to increase the social norm to be a donor. While this can increase individual motivation to donate, it may also evoke psychological reactance, a reaction to perceived threat of freedom resulting in a reduced willingness to enact the behaviour in question (Brehm & Brehm, 1981), due to

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feeling forced and increase barriers instead. Alternatively, the state’s intervention may be perceived as a shift of control over one’s body to the government. While these are only some examples, it is possible that other variables may gain or lose importance in the new system. The present study

First, the present study will examine if the motivators and barriers mentioned in the literature also apply in a Dutch context and will extend the gaps of previous literature for example regarding the unclear role of self-image. Moreover, previous research of motivators and barriers is often relatively old (Parisi & Katz, 1986; Sanner, 1994), and based for example on religious reasons such as bodily integrity. However, societal shifts within the last years have decreased the impact of religion, also in The Netherlands (Centraal Bureau voor de Statistiek, 2018). Thus, the importance of religious reasons may have decreased while different factors might have become important instead.

Second, after having identified the individual determinants of one’s decision, the present study will explore if the change of system affects the importance of the aforementioned determinants and whether or not new determinants emerge.

Method Participants

Participants had to meet certain criteria to be considered in the study. First of all, they had to have lived in the Netherlands for the past three years to ensure that they have noticed the debate surrounding the change of consent systems. Second, participants needed to be able to speak Dutch to ensure that they were able to be informed about the change of system which is mainly relevant for Dutch citizens, thus, the public discourse was mostly held in Dutch. Last, participants had to be aged between 18 and 30 years.

Two sampling approaches were used. First, purposive sampling was applied. In order to avoid an overrepresentation of one group, people in two groups were selected: people who

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(rather) support and people who object to organ donation, respectively. Moreover, the aim was to have groups with a roughly equal distribution of males and females. Afterwards, theoretical sampling was applied. During the first call for interviews, it became clear that people are not only for or against organ donation. Some were undecided and, moreover, some chose the next-of-kin option. Thus, the groups uncovered during data collection were added to the participant search. Potential participants were approached through the personal network of this study’s researcher, using a snowball system. Thus, some participants were familiar with the interview prior to their participation in the interview. If they agreed to participate, they were first asked if they met the criteria for selection before making an appointment with the researcher. Because later on in the study only participants not wanting to donate were still required, it was also asked if participants were rather pro or against donation or undecided. One person approached did not agree to participate. No participant dropped out.

Although sample size in qualitative research is generally determined by theoretical saturation, due to the restricted time frame, only 19 participants (eight males, 11 female) between 19 and 30 years old were interviewed without reaching theoretical saturation. None of the participants received compensation for their participation.

Design

The study made use of individual, semi-structured interviews. Individual interviews were chosen due to the highly sensitive nature of the topic which is inevitably concerned with one’s own death. Participants may feel uncomfortable or be unwilling to share their beliefs with other people, therefore, individuals’ interviews allowed to respect their privacy and comfort zone. Ethical approval was obtained before approaching participants. The interview was pilot tested with two donors due to a lack of nondonors.

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All interviews were conducted by the researcher (female), a Masters student in Communication Science. Having a Bachelor’s degree in psychology, the researcher had prior knowledge of interviewing techniques. Because three participants lived too far away to be interviewed face-to-face, these interviews were conducted through a Skype video call; the remaining 16 interviews were face-to-face. Only the interviewer and the interviewee were present during the interviews. Each interview was either conducted at the interviewee’s or the interviewer’s home or in the buildings of the University of Amsterdam. Before starting the interview, all participants received a fact sheet about the study content and privacy regulations and signed a consent form. Interviews lasted between 20 and 45 minutes and took place between the 7th and 23rd of May 2019. An overview of all interviews can be found in Appendix A. During the interviews, participants had a chance to take time to think and to not answer questions if they felt uncomfortable. At the end of each interview, the participant was given the opportunity to ask questions and talk about their experiences during the interview. All interviews were audio-recorded and transcribed afterwards.

An interview guide (see Appendix B) was used during the interviews to help to maintain structure and cover different topics and aspects derived from the theoretical background. Moreover, notes were made during the interviews.

Interview guide and measures

The interviews were aimed to resemble a natural conversation to put the participants at ease. At the beginning of each interview, a standardised introduction was given, briefly explaining the topic and revealing that participants may have irrational arguments. After the second interviewee remarking that people may perceive “irrational” to be offensive or stigmatising, it was changed into “weird” which is more casually used in practice. Participants were encouraged to simply talk about their opinions without fearing evaluations or negative reactions.

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The interview was divided into two parts. First, their individual motivations and barriers (not) to become an organ donor were examined corresponding to the first part of the research question. It covered several subtopics based on the literature review such as cognitive or social determinants. Generally, all questions within the topics and parts were constructed to start more generally, leaving space for the participant to first contribute their own views and opinions. As the interview progressed, questions became more specific and related to the determinants found in the literature review (e.g. medical mistrust and social influence) as far as they were not covered yet). Moreover, participants were encouraged to reflect explain their arguments in depth.

The second part of the interview was concerned with the Dutch consent system change and potential changes as to the determinants of being a registered organ donor, corresponding to the second part of the research question. First of all, the system (change) was explained and the participants’ general opinions towards the system (change) were examined. Afterwards, a potential change in determinants impacting one’s organ donor registration. To do so, the participants were asked about their main motivators and barriers mentioned in the first part of the interview. Subsequently, participants were asked if the importance of the main motivators and barriers gain or lost importance, and whether additional motivators and barriers became relevant when considering the system change (i.e., before and after).

Analysis

All interviews were analysed by the researcher using the qualitative research software Atlas.ti. The analysis started with open coding. Because in this initial round all interesting statements were coded, it resulted in around 300 codes. During this phase, both new concepts and concepts derived from the literature review were coded. After this initial coding, the codes were cleaned up by merging codes indicating the same concepts which reduced the

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code number by half. Afterwards, interview transcripts were recoded because some patterns and concepts evolved during the first coding which had not been coded clearly throughout all interviews. Afterwards, the code list was cleaned up again. Nevertheless, several revisions of the code list were done by relabelling and merging codes.

After open coding, models of the motivators and barriers as well as the changing determinants were developed. Three code groups were created which contained codes relating to motivators, to barriers and to the system. The code groups concerned with the system were further divided into codes related to the changing determinants, as well as positive and negative attitudes towards the system itself. Within the code groups, findings were compared to previous literature and labelled accordingly, moreover, new concepts were added. Moreover, the code labels were standardised according to their content (e.g., “barrier-affect-mistrust-early” for the affective barrier of medical mistrust due to the fear of premature death) to ensure a better overview of the different factors. Consequently, codes were merged and relabelled throughout the process until they resulted in the final determinants. Lastly, these determinants were compared between the different participant groups in order to see which determinants occur within which group.

Quality criteria

In order to keep track of the thought process during the analysis, a research diary was kept. In this, different steps of the analysis, thoughts about and summaries of the different interviews as well as general thoughts were written down. This diary also contains memos regarding different important topics during the analysis, e.g., regarding the different attitudes between the different participant groups or regarding the preference for living donation. Memos were written to clarify thoughts about emerging topics and extended throughout the analysis.

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During the interviews, member checking was applied after every section by repeating and rephrasing the arguments mentioned to ensure their completeness and correctness. Complex arguments were interrogated similarly. Peer debriefing was applied in several ways. On one side, meeting with the researcher’s supervisor served for feedback. Moreover, peers from the communication field were asked for their opinion on whether the author was (un)clear about something, for example about the nature of the different dimensions. Moreover, in order for other researchers to thoroughly understand the method and derivation of the results, the method section and the results have to be thoroughly described. Therefore, the COREQ-checklist (Tong, Sainsbury, & Craig, 2007) has been used as a guideline for both sections. Which items of the checklist have been applied in this research is illustrated in Appendix C.

Results

In the following paragraphs, first, information about participants’ donor status will be given. Secondly, motivators and barriers identified will be discussed as well as the system’s effect on the determinates. Lastly, additional findings will be presented.

Donor status

Four participants chose to leave the decision to a next-of-kin, four did not want to be an organ donor, seven want to be an organ donor and four were still undecided. Some notes have to be made about this. First, only four out of seven participants wanting to be a donor had already made an official choice in the opt-in system. The remaining three explained their intention-behaviour discrepancy by organ donation, becoming a donor and death in general being “quite distant” topics. This stopped them from going through the process of signing up: “It’s more so that death is just kind of a foreign concept at this young age. So, you don't really think like, oh, this is something I should do and get handled”. In turn, two nondonors already registered their decision before the change of systems, despite the opt-in system not

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require an active decision in order not to be a donor. Second, while two of the next-of-kin participants left the decision to their family because they were undecided, two were in favour of organ donation but chose this option for personal reasons described in the appropriate paragraph below.

Third, three undecided participants moved towards no consent and one towards consent. In the next paragraphs, participants will be referred to as either nondonors (four) or donors (nine) if they expressed a clear opinion or undecided (six) if the decision was unclear, regardless of their registered choice. Importantly, because the new system will only become applicable in summer 2020, all behaviours regarding in the new system are only anticipated.

Table 2

Overview of results

Dimension Motivators Barriers

Cognitive factors

- Functional views (D)

- Doing good with little investment (D, U)

- Decreases organ shortage (D) - Decreases black markets (D) - Improves medical procedure (D)

- (+) Insufficient knowledge (U) - (+) Increases overpopulation (U) - [(+) Self-efficacy (N)]

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Affective factors

- Feeling happy about saving someone (D)

- Immortality (D)

Body

- Illusion of lingering life (U, N, D) - Inappropriate (N, D)

- Lack of dignity for corpse - (U, D)

- (+) Loss of control over body (U, N)

Religion/Spirituality

- Prevents funeral rituals (U, D) - Special meaning of organs/

trait transference (D, N) Recipients - Undeserving (U, N) Death - Uncomfortable (U, D) - Jinx (U)

- Keeping it natural (U, N) - Uncertainty about afterlife (U) Medical mistrust

- (+/-) Take organs too early (N, D) - Validity of brain death (N)

Social factors

- (+) Social /societal norm (D, U) - Relatives proud (D)

- Personal experience (D + anticipated (U, N))

- (+) Societal norm causing reactance (N, U) - Social pressure (N, U) - Personal experience (D) - (-) Family distress (N, U) Moral factors - (-) Altruism (D, N, U) - Reciprocity (D, U) - Solidarity (D) - Moral obligation (D) Self-image related factors - (-) Feeling proud (D) - (+) Guilt (U) - (+) Reactive personality (N)

Notes: Explanation of signs: (1) Participant groups: D = Donors, N = Nondonors, U = Undecided. (2) Changes in light of the system: Determinants written in bold change in light of the opt-out system. The sign before the determinant in brackets indicates the direction of the change: (+) = importance increased, (-) = importance decreased, (+/-) = importance both increased and decreased. Determinants written in bold and in square brackets were only mentioned to develop within the opt-out system.

Motivators and barriers of donor registration

Correspondingly to the theoretical framework, motivators and barriers identified in this study will be discussed according to the five dimensions (for an overview see Table 2).

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Motivators of donor registration. Motivators to consent to organ donation were found within all dimensions and were mainly related to holding functional views, social and moral considerations as well as self-image related motivators.

Cognitive motivators. Cognitive motivators were concerned with functional views of

organ donation and death and societal benefits.

Participants held either positive or neutral attitudes towards being a donor, even when they personally did not want to donate: “Well, that's up to the person of course. I don't mind whether you're a donor or not” (nondonor). No participant perceived being a donor as explicitly negative; conversely, participants throughout all groups perceived the willingness to donate as something good. Remarkably, many nondonors and undecided also held positive attitudes, which supports previous literature assuming a weaker association between attitudes and behaviour (Morgan et al., 2008; Quick et al., 2016). Self-efficacy was high among all groups.

Regarding the underlying beliefs, all donors held very functional views of their body, organ donation and death including having no use for them after death: “we're just a bunch of molecules. And as soon as I'm done using my particular chunk of molecules, I let someone else use them if they're of no use to me anymore” which is in line with previous literature (Sanner, 1994; Scandroglio et al., 2011). Moreover, donors and undecided saw donor registration as easy way to help people with little own investment (because they are dead) which is a “win - win situation”.

Besides, donors were motivated by societal benefits such as contributing to decreased organ shortage and need for black markets: “it’s like decriminalising drugs in a way that if the supply is actually there then there is no demand for a black market”. Lastly, one donor hoped that by providing own organs, medical professionals can practice and find improved ways of donation. None of these motivators have been uncovered in the literature about organ

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donation so far. While fear of one’s organs being sold on the black markets has been previously mentioned as barrier (Hyde et al., 2012), decreasing black markets was never mentioned as motivator. Notably, this motivator is classified as cognitive while the respective barrier was previously classified as affective determinant; while a general existence of black markets and individuals buying organs is discussed in The Netherlands (cf. Hermans, 2019) and the wish to help reduce the need for such measures are reasonable, the fear of one’s own organ being illegally sold after death is rather unlikely and not based on rationality.

Affective motivators. Only two affective motivators were identified, and this

exclusively by donors. One motivator was a general positive feeling when helping someone or saving someone’s life: “it just makes me happy to think that a part of me can actually make a difference in someone's life”. Moreover, as identified in previous literature, immortality and overcoming death were mentioned as motivators, donating was even compared to a “legacy” by “having your name stamped on the building, having your heart beat in someone else's chest” (Morgan et al., 2008; Newton, 2011; Parisi & Katz, 1986).

Social motivators. Social motivators related to (subconscious) social norms, family

reactions and personal experience. While social pressure or a social norm were not explicitly mentioned as motivators, some donors and undecided thought being a donor was “normal” in their social environment as well as in The Netherlands. One undecided even mentioned hesitation about revealing her consideration to withdraw consent to her friends because she feared their reactions. Moreover, one donor mentioned his parents to be “proud” of him for being a registered donor. Both views imply the (subconscious) impact of a positive norm perceived by donors and undecided within their social environment and in The Netherlands which is in line with previous findings (Nijkamp et al., 2008; Park & Smith, 2007). However, family’s and friends’ opinions were unknown in some cases within all groups.

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Some donors and nondonors knew someone who needed an organ; donors mentioned this personal experience to impact their view on being a donor because the topic “comes closer” and “makes you want to help”, i.e. through increased salience of organ donation. In turn, one nondonor was not affected by it. While the impact of personal experience was previously found (Wakefield et al., 2010), this possibly indicates that this counts for mainly nondonors and undecided individuals. Moreover, the effect seems to be rather indirect by increasing salience. Importantly, a family member or oneself needing an organ were the only factors nondonors (and many undecided participants) considered to possibly change their decision.

Moral motivators. As in previous literature, moral motivators were based on altruism,

reciprocity and solidarity (Hyde et al., 2012; Sanner, 2006; Scandroglio et al., 2011). The main motivator throughout all groups were altruistic principles of saving people’s and especially children’s lives. Moreover, the principle of reciprocity motivated undecided and donors because, as an undecided put it: “if you are not helping other people why should they help you”. The principle of societal solidarity was mentioned as well. Some donors referred to donor organs as “resources” and “common goods” which ought to be shared within a society and saw a “social responsibility” and “moral obligation” to become a donor.

Self-image related motivators. Self-image related motivators related to feelings of

pride and, in contrast, guilt. Generally, donors reported not to perceive their registration as integral part of their personality, despite some reporting to feel proud to (possibly) save lives. Remarkably, all groups perceived donors to be good people. In contrast, some donors reported that they would feel worse if they did not consent and held negative images of nondonors. This indicates that donors indeed obtain benefits for their self-image based on their donor status and associated feelings such as being a good person, as was suggested in literature (Hyde & White, 2009).

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Correspondingly, some undecided repeatedly mentioned to feel “frustrated” and “selfish” for not wanting to donate: “why does my head say such things”. This guilt may result from cognitive dissonance between moral and social norms and personal affective barriers. Similar findings were reported by Nizza and colleagues (2016); moreover, anticipated guilt was found strongly associated with higher intentions to donate (Wang, 2011). Assumingly, many undecided seemed to have a relatively clear decision to not be a donor, however, did not want to admit this (to others and themselves). Nondonors generally did not related their decision to their self-image, positively or negatively.

Barriers of donor registration. Barriers were found within all dimension except for the moral dimension, however, personal affective reactions and social barriers were most important by far.

Cognitive barriers. Most participants stated that they see themselves as not

thoroughly informed but still having enough basic knowledge to make a decision, however, one undecided mentioned that him not knowing enough about the process of organ donation stopped him from signing up. Conversely to perceived knowledge levels, actual knowledge levels appeared to be insufficient throughout interviews in all groups; an overview of all questions emerged during the interviews concerning knowledge gaps is found in Table 3. Interestingly, more nondonors than undecided and donors reported to have informed themselves about donation.

Intriguingly, some undecided reported the concern of contributing to the planet’s overpopulation by donating their own organs as barrier to consent, by way of the extension of life impacting an already increasing population. Nothing similar has been mentioned in the literature so far which may be because such sustainable concerns became only important within recent years with the societal conversations about imminent climate change.

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Affective barriers. As found in previous research (cf. Newton, 2011), affective

barriers mainly surrounded topics like the body, spirituality, death, recipients and medical mistrust. A main barrier was discomfort with posthumous organ procurement for undecided and nondonors. Those were based on the illusion of lingering life (Sanner, 1994): “when you're dead you don't feel it anymore, but now I just can't imagine how that would be” (undecided) and the fear to experience pain: “It just scares me that if I’m dead they’re gonna cut me open and remove all the parts (undecided)”. Moreover, nondonors and undecided perceived organ procurement as “inappropriate” because “a person lived in it” and as “not a nice death”. Feeling uncomfortable and this wish for dignified treatment of the corpse were also frequently mentioned among donors. Several undecided and donors did not want to donate skin and eyes due to fear of looking different and uncomfortable feelings associated with donating outer tissues; the latter was even mentioned despite the participant knowing that no skin is taken from visible places which confirms that these reactions are not based on rational appraisals. Furthermore, undecided and nondonors feared a loss of control over their own corpse: “it is my body and I don’t want others to use it in ways you can’t control” (undecided). While these findings largely align with previous findings (Morgan et al., 2009; Newton, 2011) the thoroughly researched feelings of disgust were not mentioned (Quick et al., 2016)

The only clearly religious barrier was the fear of not being able to be buried or have certain funeral rituals for undecided and nondonors. No participant mentioned contrary religious beliefs about God’s will or bodily integrity, despite both being important factors in previous literature (Morgan et al., 2009; Wakefield et al., 2010). This could be due to the fact that the sample for this study was relatively young and highly educated. Alternatively, many studies were conducted in the United States where religion is still more important than in The

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Netherlands (Centraal Bureau voor de Statistiek, 2018; Pew Research Center, n.d) which may explain why American studies found bodily integrity to play a more important role.

Nonetheless, undecided mentioned the uncertainty about a potential afterlife as a barrier to register as an organ donor. Spiritually, heart and eyes were perceived to be important for one’s personality by donors and nondonors, holding emotions and “views on the world” not to be shared. Nondonors were also concerned about the heart’s spiritual impact on the recipients through trait transference as reported previously (Sanner, 2006).

Table 3

Questions emerged during the interviews due to misconceptions and knowledge gaps organised in order of the donation process

No. Statement

1 Can everyone become a donor? (assumed disqualifier: high age, smoking, drinking alcohol)

2 Which organs/tissues can be donated and where is tissue taken from (e.g. face)? 3 Under which circumstances do you have to die to be able to donate organs? 4 What is brain death and is the same as coma?

5 Do you feel pain during organ procurement?

6 How does the procedure work? (Time frame, place, medical procedure etc.) Do the doctors know the patients who will receive the organs?

7 How does the process work for the donor’s family and how will they be treated? 8 Who is on the waiting list and how is it determined who is more urgently in need

of an organ?

9 How will it be determined who receives the organs (matching process)? 10 How long will/can the organs be stored until someone receives them? 11 What will the donor’s body look like after the donation?

12 What body care / funeral are possible after being a donor? Can/will organs and body also be used for research?

13 What impact does organ donation have on the recipient physically and does it really benefit him?

14 Is it possible for the family to meet the recipient?

In regards to recipients, nondonors and undecided doubted if the potential recipients were deserving of a new organ because the need for an organ transplant might be self-imposed by alcohol or tobacco misuse or the recipient may be a “bad person” for example a

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bully, child molester or murderer. In either case, they did not want to take the risk of their organs being donated to such people. All these findings are largely in line with previous literature (Hyde et al., 2012; Newton, 2011). The wish for recipients to be younger, a “good person” or able to “live a good life” was reported by donors as well. Interestingly, some undecided and nondonors mentioned to prefer living to posthumous donation because it allows to retain more control over the process as well as the organ allocation, for example to friends or family members.

Participants in all groups mentioned an uncomfortable feeling thinking about death and undecided admitted having considered it to a jinx-factor (Morgan et al., 2008). Other participants wanted to keep death natural: “death is the most natural thing there is and I think we should keep that natural” (nondonor) and wanted “nature to use my body how it has to be like animals eat your body and use it for trees that can grow” (undecided) which has not been covered by literature so far.

Medical mistrust was a barrier in two cases. One nondonor doubted the validity of brain death and was scared of premature death: “I'm afraid that they will say we are dead earlier because they need organs than if you don't want to give your organs”. Remarkably, the latter fear was so important for one donor that he chose the next-of-kin-option to not reveal his donor status to the medical professionals until they independently declared his death. However, this expression of medical mistrust was an exception in this study, as the majority of participants perceived medical mistrust as conspiracy theories.

Social barriers. Social barriers related to reactance to social norms, negative family

reactions and concerns about the family experiencing distress. Most nondonors reported their families and friends to have the same opinion, indicating an impact of the social norm in the close environment. In contrast, psychological reactance to the social norm in The Netherlands to be a donor was an explicit barrier for nondonors. This was based on the associated

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“stigma” and that “you are almost forced socially to become a donor because otherwise people have a certain opinion about you”. This has not been covered by previous literature, reactance in an organ donation context was only studied in the context of reaction to persuasive messages (LaVail, Anker, Reinhart, & Feeley, 2010).

Interestingly, while most participants perceived a social norm in The Netherlands to be a donor, some nondonors thought that wanting to be donor is the exception while donors thought it is the norm indicating that nondonors perceive a norm which is perceived not to reflect the individual’s wishes.

Social pressure from the close environment was mentioned as barrier when family members openly expressed the wish for the participant not to donate their organs which is in line with previous findings (Park & Smith, 2007; Rocheleau, 2013). One donor therefore chose the next-of-kin option: in case her parents are alive at time of her death, a third person would decide against her body being donation and agree in case the parents had passed away already. An opposed family opinion did not always impact the decision: in other cases, the family holding a different opinion did explicitly not affect participants’ decision (nondonors, donors).

Interestingly, one of the main barriers mentioned among all groups (but mainly nondonors and undecided) was the fear of one’s family to experience increased distress when donating one’s organs. This distress was seen to be caused by the donation process, including for example taking the corpse to surgery immediately after death without giving the family time to say goodbye, visible alterations of the corpse (e.g. scars) and a general disrespect of the family’s grief in favour of organ procurement. Moreover, misconceptions about the impossibility funeral rituals as an organ donor were perceived to complicate the death for the family. While social pressure from the social environment was previously found to be a barrier to registration, anticipated distress for the family has only been mentioned in relation

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to visible alterations and was not studied thoroughly (Hyde & White, 2010). However, visible alterations to the corpse have been among the most mentioned barriers in this study. Importantly, this family stress was largely anticipated and rarely based on conversations in which family members expressed such concerns. Notably, one donor reported negative direct experience with family distress during organ donation of a family member as reason for this barrier. While it was not enough to change her mind, she stated that if she heard more about such cases, she would withdraw her consent.

Moral barriers. No moral barriers were identified.

Self-image related barriers. Interestingly, several nondonors frequently seemed to

frequently display trait reactance i.e. the general tendency to experience reactance when perceiving one’s freedom to be endangered (Brehm & Brehm, 1981). They reported generally to not do what is “mainstream”, in this case to be an organ donor based on the social norms in their social environments and society. These statements may indicate donor registration might also be subject to trait reactance and individuals object to donor registration “out of principle”. However, trait reactance was not subject to research unless as to reactions to organ donation communication (Quick, Scott, & Ledbetter, 2011).

Motivators and barriers in light of the system change

Social, moral and self-image related motivators were found to change in light of the new system while no change was identified for cognitive and affective motivators. The importance of barriers changed within all dimensions besides moral determinants as no moral barrier was found. However, no participant reported a change of their donor registration status or an entirely different attitude because of the system change, despite the change of importance of some factors.

Motivators. Among each of the social, moral, and self-image related motivators, one motivator changed importance, namely the social norm, altruism and guilt. Firstly, some

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undecided were more motivated by an increased social norm of consent being the default, because the increased social norm made it more difficult to unregister. Secondly, one donor mentioned the altruistic motivator of helping people to lose importance because the supply for those needing organ transplants was to increase with the opt-out system, making it “less special” to be a donor. Finally, and associated with this, one donor mentioned the feeling of pride or “achievement” to decrease if being a donor becomes the norm, thus, is not distinctive anymore. However, this would not stop him from signing up. Both determinants raise the question of whether or not donors act out of true altruism (i.e., benefitting others) or because of benefits for oneself (see paragraph on self-image). However, not enough data was obtained in this study to make generalized conclusions about this. Moreover, undecided reported increased feelings of guilt because now “I have to actively say no to it. So, it it's kind of a statement if you do it” which indicates increased internal pressure.

Barriers. Next to all cognitive barriers, the affective barrier of losing control over the body, medical mistrust, concern over family distress as well as reactance towards social norms and in general changed importance. In regard to cognitive barriers, two barriers changed and one became only important considering the opt-out system. Sufficient knowledge became more important in order to arrive at an informed decision because the opt-out system requires an action to withdraw consent and thus, a prior decision. Moreover, the barrier of contributing to overpopulation increased for some undecided because the system leads to more organs being available and thus, more people surviving. Interestingly, although self-efficacy was generally high and neither mentioned as barrier nor motivator previously, its importance increased for some nondonors in light of the opt-out system, however, not in order to opt-in but to opt-out; not knowing how to opt-out was perceived as problem and associated with negative reactions towards the system change and the government for

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seemingly “forcing” citizens into being a donor without providing enough information for nondonors.

Two affective barriers had a different level of importance for some participants in light of the opt-out system. First, the fear to lose control over the dead body increased for nondonors and undecided. They perceived the government making the decision for them as losing control over their body. Second, the importance of medical mistrust changed, interestingly, in two ways; mistrust increased because the option of harvesting a deceased’s organs was perceived to become more salient in medical professionals’ mind, thus, the chances of doctors accepting one’s death prematurely would subsequently increase. Contrarily, mistrust was perceived to decrease because more organs would be available due to more donors, thus, doctors are not reliant on every potential donor and can focus on saving lives instead.

As to the social determinants, a number of undecided and nondonors developed even more reactance towards the increased social norm to be a donor both because of making being a donor the norm and because of the government “trying to force you” although “the government is not the boss of my body”. Furthermore, the risk of family distress was perceived to decrease because the procedure would improve due to more practice, facilitating the process for the family, and because it would become more normal:

Then [..] most of the people are donors, then it is just kind of normal that they're going to cut the people and also the people you love because it’s the standardised way of doing it. So, it's also about accepting that it's going to happen [..] while at the current moment it's not really normal.

Notably, this assumption is based on incorrect knowledge because becoming a donor only happens under specific circumstances; even with more potential donors, not every deceased would in fact fit the criteria for their organs to be transplanted.

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Regarding self-image related barriers, nondonors displaying general reactive tendencies openly reported these to increase with the opt-out system; the government and public opinion making them feel forced caused the opposite effect.

Salience, choice and the system. Although not related to specific motivators, some undecided mentioned the possibility of letting the new default making the choice instead of having to decides themselves. One explained: “It’s maybe also about avoiding making a choice or something. Then they make the choice for you and then you don't have to do it yourself.”. This argument was among the strongest motivators to remain registered as having ‘no objection’ among the undecided.

Moreover, participants of all groups mentioned that the new law made their opinion (more) salient: “it gets me aware of what I think because I never thought about it before this new law started.” (nondonor). Moreover, participants started to think about donation more in depth which resulted in both a changing (positively or negatively) or more stable attitude. Additional findings

Although not part directly part of the research question, the study revealed interesting insights into two more topics; the attitude towards organ donation in general as well as towards the change of system. Both will be illustrated within the next paragraphs. However, due to the limited extend of the findings, the five-dimensional structure will be abandoned and only arguments in favour or against organ donation presented.

Attitude towards organ donation. None of the participant expressed a clearly negative attitude towards organ donation, they were either positive or rather ambivalent. Interestingly, there were participants in each group who were ambivalent, however, most frequently among undecided. This may be due to undecided looking for more arguments to arrive at a decision and thus including more factors into their decision making compared to donors and nondonors. Moreover, many people holding an ambivalent attitude towards organ

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donation clearly stated that being a donor is a good thing, mainly because of altruistic motivators.

Arguments in favour of organ donation. The main argument supporting organ

donation among all groups was donation to save people’s lives. Moreover, some donors stated that it should be done because it is “one of the actually nice wonders of progressive medicine” and “I see no reason not to and I just think that's allowing something live is way great. So why not - very basically”.

Arguments against organ donation. First, donation was perceived as unprofitable for

society. This was explained with organ donation contributing to the survival of people with weak genes and passing those on, leading to more people needing organs. Undecided also mentioned sustainable concerns of overpopulation because organ donation aims at keeping more people alive which could restrain resources for the rest of the society. Moreover, undecided and nondonors perceived organ donation as unnecessary because individual life is dispensable: “When somebody dies, the society will not care because we can also just go on without you, there are more than enough people.” (nondonor). However, all groups also made the distinction between societal and personal goods; while “for humanity, it is just not good”, if oneself or a close person is in need of an organ, all participants acknowledged wanting their loved one to be saved. In contrast to the motivators, the mere medical possibility did not justify its execution: “I think; okay it's possible. But why do we really need to do this?” (nondonor). Several nondonors and undecided mentioned that “it doesn't feel right to do it and it's feels a little unnatural” (nondonor) which is the only argument regarding donation which has been identified in previous literature (Sanner, 1994). This was explained with death being a natural part of life which cannot and should not be fought against by all means while donation “extends human life beyond what is reasonable” and medical technology having gone “too far”. Last, undecided and nondonors considered the recipients’ wellbeing.

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