Rozprawy doktorskie na temat „Organ donation”

This dissertation consists of three chapters that focus on topics in fields of experimental economics and health economics. The first chapter, “Do I Care if You Know I Betrayed You?” , examines how concern for others’ disutility from betrayal can affect the decision to repay trust in the trust game. We use a laboratory experiment to compare trustees’ behavior when betrayal is obfuscated to an identical monetary payoffs situation where betrayal is revealed. We find that more trustees choose to defect in our experiment when betrayal is obfuscated than when it is revealed. Our result suggests that concern for betrayal costs influences not only the decision to trust but also the decision to repay trust. The second chapter, “Increasing Organ Donation via Changes in the Default Choice or Allocation Rule”, utilizes a laboratory experiment to evaluate the effectiveness of alternative public policies targeted at increasing the rate of deceased donor organ donation. The experiment includes treatments across different default choices and organ allocation rules inspired by the donor registration systems applied in different countries. Our results indicate that the opt-out with priority rule system generates the largest increase in organ donation relative to an opt-in only program. However, sizeable gains are achievable using either a priority rule or opt-out program separately, with the opt-out rule generating approximately 80% of the benefits achieved under a priority rule program. The third chapter, “Improving the Approach to Organ Donor Registration”, proposes to improve organ donor registry by providing a persuasive message with the registration request. I designed a laboratory experiment to examine the impact of the persuasive message on donation decisions. The results indicate that the persuasive message has a positive impact on donation decisions in the early rounds of the experiment. Subjects were about 21 percent more likely to register as a donor in round 1 of the experiment when they were provided with a persuasive message. This behavioral difference across treatment decreased as subjects played more rounds, since subjects in the control treatment learned the information in the persuasive message through playing the game. We further find this treatment effect is mainly from subjects who are not organ donors in real life, while the treatment effect is very small for those who are self-reported organ donors.

Objective. To evaluate organ donation (OD) policy, appropriate comparisons between different OD programs are required. The objective of this research was to investigate alternative methods of measuring national rates of OD using publicly available data and examine the implications of using each method as a measure of performance.
Method. We used 7 measures to calculate deceased OD rates, based on 7 different denominators. Data were collected from OD organizations and the World Health Organization. OD rates for each measure were calculated for 10 countries for the years 2001--2004. Relative rates were calculated using Spain as the standard.
Results. We found variations in relative rates across the proposed measures. Regardless of the measure used Spain excelled.
Conclusion. If the purpose of the OD rate is to identify the top performer internationally, it may not matter which measure is used providing this is done with an understanding of its limitations.

Hundreds of Canadians die each year while awaiting a vital organ transplant. Consistent with several countries in the world, the demand for organs for transplantation outweighs the supply. In Canada, citizens must actively register to enlist themselves as organ donors after death occurs. The aim of this thesis was to examine and evaluate the acceptability of an emergency department-based organ donation registration strategy. Secondarily, we identified the proportion of emergency physicians, nurses and clerks who are personally registered as organ donors. We conducted three self-administered surveys as well as an a priori sub-study to evaluate the effect of a prenotification letter on postal surveys of physicians. We discovered that key stakeholders in emergency departments are engaged in organ donation and feel that the emergency department is an acceptable place to promote organ donation registration. In addition, we identified several barriers to such a potential intervention which largely revolve around time and resource limitations.

This thesis explores the opinions and attitudes of health care (pre-registered nurses, post-registered nurses and medical students) and non-health related students (computing students) to determine the factors that influence their support of the organ donation and transplantation system and the factors that influence their willingness to register consent as an eye (cornea) donor. The research study was conducted in two separate but related stages. The use of a quantitative questionnaire was employed to investigate the opinions and attitudes of pre-registered nurses towards organ donation and to determine whether any regional variation exists (n = 667); to determine whether the opinions and attitudes of pre- registered nurses (n = 667) differ among post-registered nurses (n= 62), medical students (n = 55) and computing students (n = 102); and to determine whether the opinions and attitudes of pre-registered nurses change with further education on organ donation (n = 100). Generally speaking, the findings demonstrate that opinions and attitudes differ depending upon the region sampled, the student's background and their level of exposure to further education. The second stage comprised of a qualitative questionnaire that identified commonly held beliefs about the advantages and disadvantages, those people who would approve and disapprove, and motivating factors and barriers that relate to registering consent as an eye (cornea) donor among pre-registered nurses based in Northern Ireland (n = 38). A theory of planned behaviour framework guided the investigation into the identification of factors that influence registering consent to donate eyes (cornea) among pre-registered nurses based in Northern Ireland (n = 92). The results provide support for the theory of planned behaviour and demonstrate that attitude was the strongest predictor of intention to register consent, with the predictive ability of subjective norm and perceived behavioural control varying depending upon the TPB model used. The research study presents six findings overall and demonstrates the complex issues that exist with regard to the reasons for registering as an organ-tissue donor and the reasons why people are only willing to donate specific body parts and not others. These findings will help in the development of effective future interventions that are designed to change and guide performance of the behaviour and ultimately increase participation in organ donation by encouraging competent decision making.

Transplantation is the optimal therapy for end-stage organ failure, but the utility of this intervention is limited by a critical shortage of donor organs. This research sought to examine opportunities to improve the donor referral process, and to increase donation rates. Chapter 2 Increased organ donation rates have been exceeded by a rise in referral of potential organ donors for evaluation. This study sought to characterise potential organ donor referrals in NSW and identify factors associated with non-donation through a retrospective cohort study of NSW OTDS referral logs 2010-2015. Comorbidity prevalence was described, and logistic regression used to identify comorbidities influencing referral outcome and determine predicted probability of donation. Most comorbidities increased in prevalence over time. Comorbidity burden was higher among non-donors than donors. Significantly (p<0.01) associated with non-donation were age >65, and history of malignancy, or cardiac, kidney or liver disease. Predicted probability of a referral donating varied <1% to 54% with comorbidity burden. As donor referral volumes increase, understanding characteristics associated with non-donation may improve the efficiency of the referral process. Chapter 3 Although the risk of primary brain tumour (PBT) transmission via organ donation and transplantation is low, some donor referrals with PBTs may be declined due to concerns regarding biovigilance. This retrospective cohort study aimed to describe transmission risk and donation outcome of referrals with PBT and transplant recipients 2010-2015. Referrals were characterised and data linkage was used to identify any transmission of PBT from donor to recipient. Of 76 PBT referrals, 18 (24%) were declined due to perceived PBT transmission risk and 10 (13%) donated. All PBT donors had WHO-I or -II tumours. No events of PBT transmission were identified. There exists opportunity to increase donation rates through utilisation of PBT referrals.

Objective: To synthesize evidence from the recent interventions to improve organ donation rates and attitude towards organ donation. The effective intervention is defined as significant increases in the enrollment rate of organ donation and positive changes of attitude. And the second one is to give recommendations on feasible intervention designs based on the specific situation of Mainland China. Methods: A systematic review was conducted through PubMed, Cochrane Library, Google Scholar and reference lists. The quality of the studies was evaluated by CONSORT guideline. Results: Nine randomized control studies were included in this systematic review, and the quality of all these studies was average. The main targets of the studies were religious beliefs, distrust medical system, lack of knowledge and fear of premature death. Using lay health advisors, implementing lecture, presentation and discussion, and exposure to mass media with donation information frequently were all identified as effective components to change the attitude and improve the enrollment rate. Conclusion: Based on this systematic review, discrepant interventions could change the public attitude towards organ donation and improve the enrollment donation rate in the United States. However, given the cultural differences in China, more research is needed to see whether implementation of these interventions could improve the situation of organ donation in China.
published_or_final_version
Public Health
Master
Master of Public Health

Organ donation is traditionally based on the notion of making a gift based on altruism. An important aspect of ‘altruistic gifting’ is commitment to a solidaristic approach to meeting transplant needs. In line with this, people are encouraged to donate their organs at death to a common pool for collective provision, or donate a live organ to another freely. Given a chronic organ shortage, proposals have been made to change this system to increase donation. Proposals include introducing some organ market or payment in the form of a reward to incentivise live or deceased donation. However, these proposals have been opposed because of the grip of ‘altruistic gift’ as the only ethically acceptable way to procure and distribute organs. To support the ethical acceptability of other systems, ‘altruistic gift’ has been subject to various criticisms. One criticism is the moral relevance of altruism: people may donate on other motives other than altruism; or, altruism is not the motive that underpins most deceased organ donations. Another criticism is the moral value of altruism: even if deceased organ donations are in general altruistic, altruism does not express communal virtues like generosity that support solidarity. A third criticism is the value of the concept of altruism when understood in the pure sense: ‘pure altruism’ fashions an unnecessary or false dichotomy – gift versus sale – in the way people can ethically relate and help each other. Consistent with or following this criticism, it has been argued that use of a financial reward to incentivise donation can be compatible with preserving donation as altruistic albeit in a ‘non-pure’ sense. ‘Altruism’ and reward can co-exist as motives for donation. This thesis concerns itself centrally with the third criticism. It argues that the concept of altruism delineates a distinctive moral ‘perspective’ of a common humanity that engenders a devotion to others’ interests. Accordingly, as I argue, ‘non-pure’ definitions of altruism are misleading as to how a financial reward can be compatible with altruism. From this, the thesis argues that introduction of a financial reward for organ donation would not preserve donation as altruistic. Based on an understanding of altruism as also a motive for ‘creative’ relationships, the thesis counters criticisms of its relevance and value to deceased organ donation under a gift model. As part of its legal analysis, the thesis considers the antithesis of ‘altruistic gift’: the idea of organs as property which places individual control on their disposition at its moral centre. It has been argued that organs should be owned as property so that individuals can sell them, or transmit them to relatives so that relatives can claim payment from donation. To provoke thought on whether organs should be owned as private property like any other, the thesis proposes an inheritance regime for organs with family as default successor.

Solid organ transplantation is a rare health intervention that saves lives, improves quality of life and, where there is an alternative such as dialysis, is cost-effective. However, organ transplantation is a complex intervention that is limited by the number of organ donors, and requires life-long immunosuppression of the recipient. Infections are a common complication of organ transplantation, and a major cause of death for transplant recipients. Donor-derived infections, while rare, are of particular concern for transplant clinicians, as a potentially avoidable consequence of transplantation. Donation practice must balance the risks of infection transmission with the risks of overly restrictive donation policies that could limit this life-saving intervention. Post-transplant, clinicians must remain vigilant for new recipient infections, whether donor-derived, reactivating or arising anew. In this thesis, I generate novel data regarding aspects of infections affecting solid organ donation and transplantation where current practice can be improved, focusing in particular on blood-borne viruses and preventable post-transplant infections. Theme 1: Assessment of potential organ donors for blood-borne virus transmission risk All potential solid organ donors are rigorously screened for their suitability to donate. One reason potential donors may be declined is where there is perceived to be an increased risk of transmission of infectious diseases, including blood-borne viruses (BBV) such as hepatitis B (HBV), hepatitis C (HCV) and human immunodeficiency virus (HIV). Unexpected BBV transmissions have indeed led to devastating recipient outcomes. However, testing and treatment for these conditions have evolved substantially in recent years and decades. Nucleic acid testing (NAT) is now both rapidly available and highly sensitive for infection. Implementation of NAT reduces serological window periods to smaller eclipse periods. Meanwhile, HCV has become curable in the vast majority of cases, HBV can be prevented with vaccination, or effectively suppressed, and even HIV now has effective suppressive treatments. Given these developments, a reassessment of suitability of potential organ donors with BBV, or risk factors for their acquisition, is warranted. The first aim of this thesis was to understand whether transplant clinicians can correctly interpret hepatitis serology and then consistently judge potential donor transmission risk and donation suitability. This is explored in Chapter 2 through an anonymous, self-completed, cross-sectional survey distributed electronically to Australian and New Zealand clinicians involved in kidney transplantation (2014-2015). We compared respondents’ interpretation of clinical scenarios with paired donor and recipient hepatitis B and C serology to recommendations in clinical practice guidelines. We then used logistic regression modelling to investigate characteristics associated with decisions on transplant suitability in scenarios with poor (<50%) guideline concordance. The 110 survey respondents in our sample had demographic characteristics representative of the target workforce. While donor and recipient hepatitis statuses were largely well understood, transplant suitability responses varied among respondents. For an HBV surface antigen (HBsAg) positive donor and vaccinated recipient, 44% of respondents suggested the donor was unsuitable for transplant (guideline concordant) but 35% suggested the donor was suitable with prophylaxis (guideline divergent). In four scenarios with transplant suitability guideline concordance of <50%, acute transplant care involvement predicted guideline concordant responses (OR [odds ratio] 1.69, p=0.04). Guideline concordant responses were chosen less by hepatologists, intensive care doctors (OR 0.23, 0.35 respectively, p=0.01), and New Zealanders (guideline concordant responses OR 0.17, p<0.01; alternative responses OR 4.31, p<0.01). Hence, we conclude that despite broadly consistent interpretations of hepatitis serology by respondents, resulting transplant suitability decisions vary, and often diverge from guidelines. Having established variability between clinicians, this thesis next aimed to describe current practice regarding potential donors with increased risk for BBV transmission in Chapter 3. Specifically, we aimed to describe the size and characteristics of this group, whether they proceeded to donate, and reasons not donating. To do this, we conducted a cohort study of all potential organ donors referred in New South Wales, Australia between 2010 and 2018. Baseline risk potential donors were compared to potential donors with increased BBV transmission risk, due to a personal history of HIV, HCV or HBV and/or behavioural risk factors. We found 624/5749 potential donors (10.9%) perceived to have increased BBV transmission risk. This included 298/5749 (5.2%) with HCV (including HBV co-infections) and 239/5749 (4.2%) with increased risk behaviours (no known BBV). Potential donors with HCV and those with increased risk behaviours were younger and had fewer comorbidities than baseline risk potential donors (p<0.001). Many potential donors (82 with HCV, 38 with risk behaviours) were declined for donation purely due to perceived BBV transmission risk. Most were excluded prior to BBV testing. When potential donors with HCV did donate, they donated fewer organs than baseline risk donors (median 1 versus 3, p<0.01), especially kidneys (OR 0.08, p<0.001) and lungs (OR 0.11, p=0.006). In summary, many potential donors were not accepted due to perceived increased BBV transmission risk, without viral testing, and despite otherwise favourable characteristics. This suggests the potential for transplantation rates to be substantially increased if more potential donors with HCV and/or increased risk behaviours were accepted. Taken together, the findings of variable donor suitability decision-making, and the rejection of otherwise high-quality potential donors without viral testing, suggest there may have been missed opportunities to donate from some potential donors with positive serology or increased risk behaviours. Supporting clinicians to identify such previously rejected potential donors with an acceptable risk profile, and using these organs for transplantation, may have the potential to significantly increase donation rates. Theme 2: Estimating the actual risks of BBV transmission To support change in clinical practice, estimates of the risks posed by increased risk donors are helpful. Blood-borne virus rates vary internationally, and no data from the Australian context was available. We synthesised existing literature to produce Australian estimates of the actual risk posed by potential donors with increased risk behaviours for BBV only (Chapter 4). We conducted a systematic review and meta-analysis of cohorts reporting incidence and prevalence of HIV, HCV and HBV among increased risk groups in Australia. The residual risks of window period infections were estimated in the setting of negative serology and NAT. Residual risk of HIV was found to be highest among men who have sex with men at 4.8 per 10,000 persons testing negative with serology (95% CI: 2.7-6.9), and 1.5 per 10,000 persons with additional negative NAT (95% CI: 0.9-2.2). Residual risk of HCV was highest among injecting drug users (IDU) with a residual risk of 289 per 10,000 persons (95% CI: 191-385) with negative serology, and 20.9 per 10,000 persons (95% CI: 13.8-28.0) with additional negative NAT. Residual risk for HBV was highest in IDU with 98.6 window period infections per 10,000 with negative serology (95% CI: 36.4-212.7) and 49.4/10,000 with additional negative NAT (95% CI: 18.2-106.9). We concluded that the absolute risks of window period infection are low among Australian groups with increased risk but negative viral testing. These findings inform shared decision-making by clinicians and recipients and have the potential to increase organ donation rates from increased risk donors where risks are considered tolerable. To understand the magnitude of transmission risks from donors with positive hepatitis serology, we next examined a cohort of linked donors and recipients (Chapter 5). The aims of this work included describing the rates of transmission and non-transmission of BBV from donors with BBV to recipients, and identifying any previously unrecognized transmissions from donors perceived to pose a baseline transmission risk. To do this, we linked transplant registries with administrative health data for all solid organ donor-recipient pairs in New South Wales, Australia, 2000-2015. All new recipient notifications of HBV, HCV or HIV after transplant were identified. Proven/probable donor-transmissions within 12 months of transplant were classified according to a published US algorithm. Of 2,120 organ donors, there were 72 with a viral infection (9/72 active, 63/72 past). These 72 donors donated to 173 recipients, of whom 24/173 already had the same infection as their donor, and 149/173 did not and so were at risk of donor-transmission. Among those at risk: 3/149 recipients had proven/probable viral transmissions (1 HCV, 2 HBV); none were unrecognised by donation services. There were no deaths from transmissions. There were no donor-transmissions from donors without known BBV. Our findings confirm the safety of organ donation in an Australian cohort, with no unrecognised viral transmissions and most donors with viral infections not transmitting the virus. The results support targeted increases in donation from donors with viral infections. Data-linkage can enhance current biovigilance systems. The local evidence of transmission risks generated in Chapters 4 and 5 provide much-needed data to tackle the evidence and practice gap established in Chapters 2 and 3. This allows the implementation of changes in clinical donation and transplantation practice which could safely increase donation rates. Theme 3: Recipient infections after transplantation Another finding from the research in Chapter 5 was the identification of a substantial number of new BBV infections that were unrelated to donor transmission risk. Beyond the 3 identified proven/probable transmissions reported above, an additional 68 recipients had new virus notifications, of whom 2/68 died due to HBV infection. The infections in these 68 recipients may have been undetected late transmission, reactivating HBV, or de novo infections. Substantial preventative measures are available for these conditions including vaccination and avoiding risk-exposures. Stimulated by this concern about preventable non-transmitted infection, Chapter 6 of this thesis aims to understand the burden of notifiable infections post-transplant, which often have known preventive strategies. To do this, we conducted a cohort study of all solid organ recipients transplanted in New South Wales, Australia, 2000-2015. We used data-linkage to connect transplant registers to hospital admissions, notifiable diseases database, and the death register. We then calculated standardised incidence ratios (SIR) relative to general population notification rates, accounting for age, sex, and calendar year, and identified infection-related hospitalisations and deaths. Among 4,858 solid organ recipients followed for 39,183 person-years, there were 792 notifications. Influenza was the most common infection (532 cases, incidence 1358/100,000 person-years, 95%CI:1247-1478), with the highest prevalence within 3 months post-transplant. The second most common was salmonellosis (46 cases, incidence 117/100,000 person-years, 95%CI:87-156), followed by pertussis (38 cases, incidence 97/100,000 person-years, 95%CI:71-133). Influenza and invasive pneumococcal disease (IPD) in transplant recipients showed significant excess cases compared with the general population (influenza SIR 8.5, 95%CI:7.8-9.2, IPD SIR 9.8, 95%CI:6.9-13.9), with high hospitalisation rates (47% influenza cases, 68% IPD cases) and some mortality (four influenza and one IPD deaths). By 10 years post-transplant, cumulative incidence of any vaccine-preventable disease was similar for most transplanted organs at 12%, except for lung recipients, where it was nearly 30%. Gastrointestinal diseases, tuberculosis and legionellosis had excess cases among transplant recipients, although there were few sexually transmitted infections and vector-borne diseases. Improved vaccination programs, health education, and pre-transplant donor and recipient screening have the potential to reduce preventable infections among transplant recipients. Conclusion: This thesis explores some ways in which infectious diseases impact organ donation and transplantation, and identifies areas where clinical practice could be improved. Transplant clinicians need more support to interpret hepatitis transmission risk as they have variable interpretations of suitability. Many potential donors have increased risks for BBV transmission, with otherwise favourable characteristics, and did not donate. Actual transmission risks from both Australian donors with BBV and potential donors with increased risk behaviours are, in absolute terms, low. A reconsideration of risk profiles for potential donors with increased BBV transmission risk could materially increase organ donation rates in Australia. In addition, organ transplant recipients have significant post-transplant infections, including both BBV and other notifiable infections such as vaccine-preventable and gastrointestinal infections. Important infections post-transplant could be prevented by improved vaccination uptake and optimised strategies, donor and recipient screening for latent infection, and donor recipient education.

This thesis analyzes the presentation of organ donation organization on Weibo. This study used content analysis to find out the Love.Hope organ donation organization’s main content of Weibo’s content. The main content includes six themes. The theme of popularizing organ donation knowledge is the majority. Through analyzing the correlation of content of each themes with shares, likes, and comments. It is concluded that people are more inclined to engage with Weibo posts with popularization of organ donation knowledge and stories of organ donors and recipients, and people also concern about the organ supply and demand situation in China. It turns out that in China, knowledge about organ donation is still scarce, which may be one of the reasons for low donation rate. The organ donation organizations also tend to publish positive information or stories and people’s approval of this kind of information will also make a positive impression on organ donation. However, there are still lots of factors are restricting the development of organ donation in China. Our social media still has a long way to go in helping people to build up their values of organ donation.

With a global and national shortage in the number of registered organ donors, this study employed a qualitative thematic analysis of thirteen episodes from popular medical dramas that aired between 2016-2020. The aim of this study was to allow for a better understanding of how the media utilizes entertainment television to portray storylines related to organ donation. The analyzed shows included in this study were: Grey's Anatomy, The Good Doctor, New Amsterdam, Chicago Med, and The Resident. From the analysis, six major themes emerged: Urgency of Transplant, Ethical Decision-Making, Emotional Impacts of Organ Donation on Patient and Families, Familial Relationships Impacting Donation, Viewer Education via Vicarious Learning, and Excitement Surrounding Surgery. In addition to these themes, both favorable and unfavorable cues related to organ donation were present throughout the analysis. These findings have implications for audience members via social cognitive theory. This study illuminated the ongoing efforts made by the entertainment television industry to portray organ donation in a factual manner and to provide the viewing public with potential opportunities for organ donation education.
Master of Arts
With a global and national shortage in the number of registered organ donors, this study analyzed thirteen episodes from popular medical dramas that aired between 2016-2020 to determine what themes were present amongst the analyzed shows. The analyzed shows included in this study were: Grey's Anatomy, The Good Doctor, New Amsterdam, Chicago Med, and The Resident. The aim of this study was to allow for a better understanding of how the media utilized entertainment television to portray storylines related to organ donation. From the analysis, six major themes emerged: Urgency of Transplant, Ethical Decision-Making, Emotional Impacts of Organ Donation on Patient and Families, Familial Relationships Impacting Donation, Viewer Education via Vicarious Learning, and Excitement Surrounding Surgery. In addition to the emergence of these themes, the analysis revealed both favorable and unfavorable cues related to organ donation were present in these entertainment storylines. This study illuminated the ongoing efforts made by the entertainment television industry to portray organ donation in a factual manner and to provide the viewing public with opportunities for organ donation education.

The worldwide organ shortage occurs despite people’s positive organ donation attitudes. The discrepancy between attitudes and behaviour is evident in Australia particularly, with widespread public support for organ donation but low donation and communication rates. This problem is compounded further by the paucity of theoretically based research to improve our understanding of people’s organ donation decisions. This program of research contributes to our knowledge of individual decision making processes for three aspects of organ donation: (1) posthumous (upon death) donation, (2) living donation (to a known and unknown recipient), and (3) providing consent for donation by communicating donation wishes on an organ donor consent register (registering) and discussing the donation decision with significant others (discussing). The research program used extended versions of the Theory of Planned Behaviour (TPB) and the Prototype/Willingness Model (PWM), incorporating additional influences (moral norm, self-identity, organ recipient prototypes), to explicate the relationship between people’s positive attitudes and low rates of organ donation behaviours. Adopting the TPB and PWM (and their extensions) as a theoretical basis overcomes several key limitations of the extant organ donation literature including the often atheoretical nature of organ donation research, thefocus on individual difference factors to construct organ donor profiles and the omission of important psychosocial influences (e.g., control perceptions, moral values) that may impact on people’s decision-making in this context. In addition, the use of the TPB and PWM adds further to our understanding of the decision making process for communicating organ donation wishes. Specifically, the extent to which people’s registering and discussing decisions may be explained by a reasoned and/or a reactive decision making pathway is examined (Stage 3) with the novel application of the TPB augmented with the social reaction pathway in the PWM. This program of research was conducted in three discrete stages: a qualitative stage (Stage 1), a quantitative stage with extended models (Stage 2), and a quantitative stage with augmented models (Stage 3). The findings of the research program are reported in nine papers which are presented according to the three aspects of organ donation examined (posthumous donation, living donation, and providing consent for donation by registering or discussing the donation preference). Stage One of the research program comprised qualitative focus groups/interviews with university students and community members (N = 54) (Papers 1 and 2). Drawing broadly on the TPB framework (Paper 1), content analysed responses revealed people’s commonly held beliefs about the advantages and disadvantages (e.g., prolonging/saving life), important people or groups (e.g., family), and barriers and motivators (e.g., a family’s objection to donation), related to living and posthumous organ donation. Guided by a PWM perspective, Paper Two identified people’s commonly held perceptions of organ donors (e.g., altruistic and giving), non-donors (e.g., self-absorbed and unaware), and transplant recipients (e.g., unfortunate, and in some cases responsible/blameworthy for their predicament). Stage Two encompassed quantitative examinations of people’s decision makingfor living (Papers 3 and 4) and posthumous (Paper 5) organ donation, and for registering and discussing donation wishes (Papers 6 to 8) to test extensions to both the TPB and PWM. Comparisons of health students’ (N = 487) motivations and willingness for living related and anonymous donation (Paper 3) revealed that a person’s donor identity, attitude, past blood donation, and knowing a posthumous donor were four common determinants of willingness, with the results highlighting students’ identification as a living donor as an important motive. An extended PWM is presented in Papers Four and Five. University students’ (N = 284) willingness for living related and anonymous donation was tested in Paper Four with attitude, subjective norm, donor prototype similarity, and moral norm (but not donor prototype favourability) predicting students’ willingness to donate organs in both living situations. Students’ and community members’ (N = 471) posthumous organ donation willingness was assessed in Paper Five with attitude, subjective norm, past behaviour, moral norm, self-identity, and prior blood donation all significantly directly predicting posthumous donation willingness, with only an indirect role for organ donor prototype evaluations. The results of two studies examining people’s decisions to register and/or discuss their organ donation wishes are reported in Paper Six. People’s (N = 24) commonly held beliefs about communicating their organ donation wishes were explored initially in a TPB based qualitative elicitation study. The TPB belief determinants of intentions to register and discuss the donation preference were then assessed for people who had not previously communicated their donation wishes (N = 123). Behavioural and normative beliefs were important determinants of registering and discussing intentions; however, control beliefs influenced people’s registering intentions only. Paper Seven represented the first empirical test of the role of organ transplant recipient prototypes (i.e., perceptions of organ transplant recipients) in people’s (N = 465) decisions to register consent for organ donation. Two factors, Substance Use and Responsibility, were identified and Responsibility predicted people’s organ donor registration status. Results demonstrated that unregistered respondents were the most likely to evaluate transplant recipients negatively. Paper Eight established the role of organ donor prototype evaluations, within an extended TPB model, in predicting students’ and community members’ registering (n = 359) and discussing (n = 282) decisions. Results supported the utility of an extended TPB and suggested a role for donor prototype evaluations in predicting people’s discussing intentions only. Strong intentions to discuss donation wishes increased the likelihood that respondents reported discussing their decision 1-month later. Stage Three of the research program comprised an examination of augmented models (Paper 9). A test of the TPB augmented with elements from the social reaction pathway in the PWM, and extensions to these models was conducted to explore whether people’s registering (N = 339) and discussing (N = 315) decisions are explained via a reasoned (intention) and/or social reaction (willingness) pathway. Results suggested that people’s decisions to communicate their organ donation wishes may be better explained via the reasoned pathway, particularly for registering consent; however, discussing also involves reactive elements. Overall, the current research program represents an important step toward clarifying the relationship between people’s positive organ donation attitudes but low rates of organ donation and communication behaviours. Support has been demonstrated for the use of extensions to two complementary theories, the TPB and PWM, which can inform future research aiming to explicate further the organ donation attitude-behaviour relationship. The focus on a range of organ donation behaviours enables the identification of key targets for future interventions encouraging people’s posthumous and living donation decisions, and communication of their organ donation preference.

The worldwide organ shortage occurs despite people’s positive organ donation attitudes. The discrepancy between attitudes and behaviour is evident in Australia particularly, with widespread public support for organ donation but low donation and communication rates. This problem is compounded further by the paucity of theoretically based research to improve our understanding of people’s organ donation decisions. This program of research contributes to our knowledge of individual decision making processes for three aspects of organ donation: (1) posthumous (upon death) donation, (2) living donation (to a known and unknown recipient), and (3) providing consent for donation by communicating donation wishes on an organ donor consent register (registering) and discussing the donation decision with significant others (discussing). The research program used extended versions of the Theory of Planned Behaviour (TPB) and the Prototype/Willingness Model (PWM), incorporating additional influences (moral norm, self-identity, organ recipient prototypes), to explicate the relationship between people’s positive attitudes and low rates of organ donation behaviours. Adopting the TPB and PWM (and their extensions) as a theoretical basis overcomes several key limitations of the extant organ donation literature including the often atheoretical nature of organ donation research, thefocus on individual difference factors to construct organ donor profiles and the omission of important psychosocial influences (e.g., control perceptions, moral values) that may impact on people’s decision-making in this context. In addition, the use of the TPB and PWM adds further to our understanding of the decision making process for communicating organ donation wishes. Specifically, the extent to which people’s registering and discussing decisions may be explained by a reasoned and/or a reactive decision making pathway is examined (Stage 3) with the novel application of the TPB augmented with the social reaction pathway in the PWM. This program of research was conducted in three discrete stages: a qualitative stage (Stage 1), a quantitative stage with extended models (Stage 2), and a quantitative stage with augmented models (Stage 3). The findings of the research program are reported in nine papers which are presented according to the three aspects of organ donation examined (posthumous donation, living donation, and providing consent for donation by registering or discussing the donation preference). Stage One of the research program comprised qualitative focus groups/interviews with university students and community members (N = 54) (Papers 1 and 2). Drawing broadly on the TPB framework (Paper 1), content analysed responses revealed people’s commonly held beliefs about the advantages and disadvantages (e.g., prolonging/saving life), important people or groups (e.g., family), and barriers and motivators (e.g., a family’s objection to donation), related to living and posthumous organ donation. Guided by a PWM perspective, Paper Two identified people’s commonly held perceptions of organ donors (e.g., altruistic and giving), non-donors (e.g., self-absorbed and unaware), and transplant recipients (e.g., unfortunate, and in some cases responsible/blameworthy for their predicament). Stage Two encompassed quantitative examinations of people’s decision makingfor living (Papers 3 and 4) and posthumous (Paper 5) organ donation, and for registering and discussing donation wishes (Papers 6 to 8) to test extensions to both the TPB and PWM. Comparisons of health students’ (N = 487) motivations and willingness for living related and anonymous donation (Paper 3) revealed that a person’s donor identity, attitude, past blood donation, and knowing a posthumous donor were four common determinants of willingness, with the results highlighting students’ identification as a living donor as an important motive. An extended PWM is presented in Papers Four and Five. University students’ (N = 284) willingness for living related and anonymous donation was tested in Paper Four with attitude, subjective norm, donor prototype similarity, and moral norm (but not donor prototype favourability) predicting students’ willingness to donate organs in both living situations. Students’ and community members’ (N = 471) posthumous organ donation willingness was assessed in Paper Five with attitude, subjective norm, past behaviour, moral norm, self-identity, and prior blood donation all significantly directly predicting posthumous donation willingness, with only an indirect role for organ donor prototype evaluations. The results of two studies examining people’s decisions to register and/or discuss their organ donation wishes are reported in Paper Six. People’s (N = 24) commonly held beliefs about communicating their organ donation wishes were explored initially in a TPB based qualitative elicitation study. The TPB belief determinants of intentions to register and discuss the donation preference were then assessed for people who had not previously communicated their donation wishes (N = 123). Behavioural and normative beliefs were important determinants of registering and discussing intentions; however, control beliefs influenced people’s registering intentions only. Paper Seven represented the first empirical test of the role of organ transplant recipient prototypes (i.e., perceptions of organ transplant recipients) in people’s (N = 465) decisions to register consent for organ donation. Two factors, Substance Use and Responsibility, were identified and Responsibility predicted people’s organ donor registration status. Results demonstrated that unregistered respondents were the most likely to evaluate transplant recipients negatively. Paper Eight established the role of organ donor prototype evaluations, within an extended TPB model, in predicting students’ and community members’ registering (n = 359) and discussing (n = 282) decisions. Results supported the utility of an extended TPB and suggested a role for donor prototype evaluations in predicting people’s discussing intentions only. Strong intentions to discuss donation wishes increased the likelihood that respondents reported discussing their decision 1-month later. Stage Three of the research program comprised an examination of augmented models (Paper 9). A test of the TPB augmented with elements from the social reaction pathway in the PWM, and extensions to these models was conducted to explore whether people’s registering (N = 339) and discussing (N = 315) decisions are explained via a reasoned (intention) and/or social reaction (willingness) pathway. Results suggested that people’s decisions to communicate their organ donation wishes may be better explained via the reasoned pathway, particularly for registering consent; however, discussing also involves reactive elements. Overall, the current research program represents an important step toward clarifying the relationship between people’s positive organ donation attitudes but low rates of organ donation and communication behaviours. Support has been demonstrated for the use of extensions to two complementary theories, the TPB and PWM, which can inform future research aiming to explicate further the organ donation attitude-behaviour relationship. The focus on a range of organ donation behaviours enables the identification of key targets for future interventions encouraging people’s posthumous and living donation decisions, and communication of their organ donation preference.

General Abstract Objective: In April 2006, the Scottish Liver Transplant Unit (SLTU) became the first NHS transplant unit in the UK to offer the option of Living Donor Liver Transplantation (LDLT). This represented a unique opportunity to evaluate the functional and psychosocial impact of LDLT upon healthy donors and their recipients. Subsequent aims were to investigate the challenge of introducing LDLT in Scotland and to establish the perceived deterrents and attractions of the procedure. An additional aim was to evaluate the impact of Living Donor Kidney Transplantation (LDKT) upon donors and recipients. Design: A series of cross sectional and longitudinal studies were designed for the purpose of this thesis (3 quantitative, 2 qualitative, and 1 mixed methods). Method: Self report questionnaires were used in each of the quantitative studies, with the addition of neuropsychological computerized tests in two studies. Semi-structured interviews were employed in the qualitative studies. Main Findings: •Prior to its introduction general support for the option of LDLT was found, although it was highlighted that the risk involved was not well understood by the general public. •Since becoming available LDLT has not been a readily acceptable treatment option from the perspective of patients due to the perceived risk for the donor, but it may be considered as a “last option”. Family members were motivated to save their loved one’s life but the personal implications of donating resulted in reconsideration of LDLT. • Staff at the SLTU perceived a lack of family commitment in relation to LDLT, which is explained as a cultural factor contributing to the slow uptake of LDLT. In Scotland, a donation from a younger to an older generation is not easily accepted. This, in addition to patients’ optimism that a deceased donation will arrive, and the poor health of potential donors, is thought to have affected the uptake of LDLT. As has the unit’s conservative approach to the promotion of LDLT. This approach is the result of a perceived reduction in the need for LDLT and a preference to avoid the risk to a healthy donor and conduct transplants with deceased donations. • In over 3 years, only one couple completed LDLT. The recipient showed functional and psychosocial improvement from pre to post procedure, whilst the donor showed slight deterioration in aspects of quality of life 6 weeks post donation, which did not always completely return to a baseline level by 6 months. The donor made sacrifices to provide her husband with a fresh start to life and unmet expectations were found to effect quality of life. •Willingness to become a liver donor is not thought to be influenced by the frame of the information provided. •Like the LDLT donor, LDKT donors experience some functional and psychosocial deterioration at 6 weeks post donation, but donors largely recover by 6 months post donation. However, the anticipated benefit to recipients was not evident and may not be quantifiable until after 6 months post operation. Conclusion: This thesis has added to current knowledge on living organ donation and specifically represents the first psychological evaluation of a UK LDLT programme. The slow uptake of LDLT was unexpected and has resulted in informative, novel research.

The number of those seeking a kidney donation in the United States continues to increase while the number of donors is not growing at the same rate (U.S. Department of Health and Human Services USDHHS, 2010). The lack of donations is more prevalent in low health literate communities which suffer from misinformation and ultimately negative beliefs toward organ donation. Thus, it is important to understand how marketing efforts can effectively change individuals’ beliefs about organ donation.

Drawing on the Self-Determination Theory and Schema Theory, I proposed that the effectiveness of health education programs, which is to motivate individuals to be involved with organ donation, can be increased by creating interventions that engage individuals’ senses. I used the term sensory activation to capture the number of senses being activated (visual, auditory, and kinesthetic). I proposed that sensory activation is related to message recall and motivation. According to Schema Theory, sensory cues are batches of information that can be stored in memory, thus affecting recall. The more senses involved in an experience, the more nodes of information available for recall, and the higher the likelihood that recall will affect motivation structures. Thus, I hypothesized that the relationship between sensory activation and motivation is positive, and, yet, mediated by recall.

In addition, research findings in sensory marketing suggest that the relationship between sensory strength and recall should be stronger for individuals with low, rather than high, health literacy. Low health literate individuals lack the cognitive ability to understand and interpret the information provided, hence, sensorial information allows them to recall the message. For high health literate individuals, understanding the message is relatively easier, hence, the addition of sensorial cues may lead to disinterest. That is, high health literate individuals may disregard additional sensorial information due to redundancy. Therefore, I hypothesized that the relationship between sensory activation, recall, and beliefs will be stronger for low, rather than for high, literacy individuals.

Lastly, Schema Theory suggests that individuals tend to simplify multiple information cues and form abstract knowledge structures. Instead of storing (and recalling) multiple information cues independently, individuals convert multiple pieces of information into abstract concepts. This abstraction process increases over time because it is easier to remember concepts rather than multiple batches of detailed information. Thus, I hypothesized that, in the long term, recall of specific information will be higher for individuals with high, rather than low, health literacy. High health literacy individuals can incorporate specific information into existing knowledge structures. Low health literacy individuals lack knowledge structures to further develop. Accordingly, low health literacy individuals will create an abstract representation of the experience. That is, low health literacy individuals will not remember specific information, but will remember the event in broad terms (abstractly). Consequently, overtime, the motivation will be stronger for high, rather than for low, health literacy individuals.

I tested my hypotheses by conducting a 3 (Sensory Strength: sight, sight + hearing, sight + hearing + touch) × 2 (Literacy: low, high), between-subjects factorial design. Sensory activation was manipulated, while health literacy was measured. I conducted the study in three phases. Phase 1 included a questionnaire of health information, motivation, beliefs, learning styles, and psychological measures prior to the experiment. Phase 2 included the manipulation of sensory activation and a questionnaire including manipulation checks and dependent variables. Phase 3 included a follow-up questionnaire two weeks later.

This dissertation, although having non-significant findings, adds to marketing literature by involving information processing and testing the role of sensory cues in message recall and motivation. Also, this work sheds light on the interplay between individual differences and the cognitive processing of sensory cues. To practitioners, this study provides normative recommendations regarding the design health interventions. Specifically, it is suggested that interventions should activate several sensory cues in order to enable short-term recall among low health literate consumers. Similarly, trends in the data suggest that health educators increase health literacy, as health literacy is a predictor for long-term recall and behavior modification. Finally, this work informs advertising professionals on how to apply sensory marketing in health promotion.

Background: Organ transplantation is getting more important and the demand increased exponentially in the past decade. However, due to the shortage of organ supply, some people died while waiting for an organ and the other may rely on all forms of organ support to live. Hong Kong has the lowest organ donation rate among the developed world despite large-scale organ donation enhancement activities implemented for decade. Since consent from family members is mandatory, it is important to understand the reasons relatives given for consenting or refusing to donation. Objectives: (1) To investigate the change of attitudes towards organ donation in Hong Kong during 2004 to 2012. (2) To understand the difficulties of transplant coordinators encountered during counseling Methods: This is a cross-sectional survey looking at the recent change of reasons of the families of the potential donors to make decision about donation. Transplant coordinators of all 7 clusters completed questionnaires after counseling each potential donor referred during the 7 months study period. Demographic data and reasons of refusal or consent of donation were recorded and analyzed and compared with previous results. Difficulties of transplant coordinators encountered during counseling were recorded. Results: Totally 52 questionnaires were completed within 7 months. The conversion rate were similar when compared to that in 2004 (44.3% in 2004 vs 40% in 2012). The proportion of older potential donor in the refusal group is higher than that of consent group (> 60 years old 51.6% vs 38%,). The demographic data was neither statistical significantly different between consent and refusal group nor correlated with refusal of donation. From 2004 to this survey, the most common reason to refusal remained to be the traditional belief of buried intact. Both were 33%. The “expressed wish of the deceased to object donation while alive” increased from 13% in 2004 to 20% in 2012 (p=0.378), and “no consensus from family” dropped from 26% in 2004 to 11% in 2012 (p=0.083). The reason “no expression of any wish” remained static when compared to that in 2004 (15% vs 16%, p=0.982). The reason for consenting to donation changed a lot. Although the most common reason remained the “wish to help others” (94% vs 41%, p<0.0001), the second and third reason changed to “feeling good by being charitable” (21% vs 0%, p=0.0071) and “not to waste useful organs” (18% vs 3%, p=0.0455) while the fourth reason was “respect deceased’s choice”(14% vs 0%, p=0.0278). The reasons of refusal and consenting donation are explained in the context of the decision-making process. The main obstacles the transplant coordinators have encountered were knowledge gap, emotion, time pressure and family or social disharmony. Conclusion: The major reasons for consenting and refusing donation did not only change in position but also change in proportion in last decade. The importance of some reasons increased significantly and strategies to improve conversion rate should be adjusted according to the changing reasons. Education to change the traditional belief, encourage expression of donation wish, create position image of donation and the benefit of transplant are all important.
published_or_final_version
Public Health
Master
Master of Public Health

On December 3rd, 1967, Dr Christian Barnard performed the world's first human heart transplant. This medical milestone propelled the technique of organ transplantation into the public arena, and simultaneously created a need for human organs that has never been met. The disparity between the numbers of organs needed for transplantation and the numbers of organ donated has generated substantial research. Most of this research has focused on individual characteristics and behaviours in an attempt to understand the individual's decision to donate. In contrast, the research in this thesis emanates from the position that we must first investigate how organ donation and transplantation is socially understood. The theory of social representations (Moscovici, 1984) proclaims an interdependence between the individual and the social, and their inseparability in the construction of social knowledge. Conceptualised thus, organ donation and transplantation moves from being understood in terms of an individual decision to a socially derived way of understanding a medical practice. Thus, the focus of the research presented in this thesis is a holistic conceptualisation of organ donation and transplantation as socially constructed knowledge. Three studies were conducted, each addressing this issue from a different methodological perspective. The first study, which was exploratory in nature, investigated whether there was a representation pertaining to organ donation and organ transplantation, and traced the development of the representation through the printed media. Drawing from research into the structural properties of a representation (Abric, 1993, 1996), and the notions of themata, anchoring and objectification (Moscovici, 1984, 1993), the findings from this study set the direction and design of the two studies that followed. The main finding from this study was the suggestion that what was initially considered to be two representations was better understood as one representational field organised around conflicting images of organ donation and transplantation as a Gift of Life and the Mechanistic removal and replacement of body parts. The findings, however, from the first study suggested a stasis to the representational field that did not accommodate the dynamism implied. Thus, the second study extended the findings of the first study and investigated the representational field through discourse from focus group discussions. The theoretical position here conceptualised consensus as consensual reality (Rose et al., 1995), and investigated the suggestion that the core of the representation is hierarchically arranged into normative and functional dimensions (Guimelli, 1998). The findings from this second study evidenced the contradictory nature of discourse around the issue of organ donation and transplantation. These were discussed in light of Billig' s (1988) rhetorical position of the role of argumentation in social thinking. The co-existence of contradiction was suggested through the differential elicitation of the normative and functional dimensions of the core (Guimelli, 1998). The final study extended the findings of both earlier studies through a delineation of the core and peripheral elements within the representational field so as to specifically investigate the dynamic co-existence of contradiction within the one representational field. The study employed a mail-out questionnaire embedded with 8 experimental conditions. This manipulated two tasks, scenario and rating scale and word association, in order to investigate the elicitation of the representation in accordance with context. This study developed the notion of themata (Markova, 2000), the role of contradiction in a representation (Wagner et al., 2000), reflexive and non-reflexive thought, and an understanding of consensus as consensual reality (Rose et al., 1995). The major conclusion of the thesis is that an investigation of the issue of organ donation and transplantation within the theoretical framework of social representations theory (Moscovici, 1984) reveals a contradictory representational field organised around the dialectical notions of Life and Death, emanating as two, seemingly contradictory, images of organ donation and transplantation as a Gift of Life and the Mechanistic removal and replacement of body parts. Moreover, the co-existence of this contradictory representational field is maintained through the differential elicitation of the normative and functional dimension of the representation in accordance with social context. An integration of the findings within the theoretical tenets of social representations theory is given, addressing the interdependence between the representational process and what is being represented. The practical implications of these findings as they relate to the societal issue of organ donation and transplantation are also discussed.

Fifty percent of the Swedish population is not aware of their relatives’ wishes on organ donation. It happens that some family members use their veto when they are asked to confirm their dead family member’s wish on organ donation and thereby preventing a potential transplant. If more people would be aware of this issue and tell each other what their standpoint is, we could help the health care to identify more organ donors and thus help more people to a better life. The project lead to an educational and physical exercise based application for tablets aimed for sixteen years old pupils where they by walking around in the physical space, learn about the organs and get physical exercise at the same time. The app is meant for schools since the school has the responsible to educate the pupils about different types of physical exercise and lifestyle. Moreover, tablets are becoming increasingly common in the schools. I was influenced by an application called Zombies Run that focuses on creating a story by collecting virtual supplies while being running outside. Some statements from the research influenced me. A lady stated that she used to take her daughter out to walk the dog as much as possible because her daughter was at risk of becoming overweight. A Donor Coordinating Doctor stated a thoughtful sentence during a workshop “Would you be willing to receive an organ if you needed a transplant? Donate your organs after death so it is possible” The Virtual Donation Challenge is an application aimed at sixteen year old pupils for educational purposes. The school is responsible for giving the students education about lifestyles, different types of exercises and CPR education, I found it most appropriate to link the application to the Physical Education subject or even Natural Science subject. The application is a quiz and the questions are linked to local GPS coordinates which the users have to visit in order to answer the questions about organ donation and how the interdisciplinary processes in the body work.

Since the 1950’s procuring organs for cadaveric transplantation has been based around a “gift of life” discourse, institutionalised through the carrying of donor cards/driving licence or registration on the NHS Organ Donor Register. Yet regardless of whether and how the deceased recorded their wishes to donate, their next-of-kin are always whether organs can be removed. Little is known about the reasons families give for refusing or agreeing to an organ donation request. In order to identify the circumstances in which an organ donation request is more likely to be accepted or refused by the family of a brain stem dead individual, semi-structured interviews were carried out in various areas of Scotland in order to ascertain donor and non-donor relatives’ beliefs, attitudes and experiences. The findings suggest that wider cultural beliefs embedded in society about the value of gifting, death and the body are brought to the specific context of an organ donation request. It is the interactions between these values and other factors, such as familial and hospital support and dynamics and the perceived value of the outcome from donation affects whether families will donate or not. The findings of such an investigation will have obvious policy implications for those interested in increasing the present UK organ procurement rate and can also inform debates about the merits of introducing alternative systems. However, a study of organ donation and transplantation can also provide the sociologist with a unique insight into several engaging areas of sociological interest: modern gift practices (including altruism and social exchange theory), the way meanings are constructed onto dead bodies by different groups, of how and when death is defined, and finally, can lead insight into an intricate relationship about how individuals’ view the relationship between personal, social and corporeal identity.

Background. Organ transplantation as one of the most effective treatment options for patients with organ failure is challenged by organ shortage around the world. This systematic review aims to summary relevant factors influencing people’s intention and behavior for organ donation. Method. Three databases, namely PUB med, Medline and China knowledge resources integrated database, were applied for literature searching. Fourteen studies, which meet the inclusion criteria and exclusion criteria, are used in this review. Quality assessment was proceeding upon STROBE checklist. Results. Seven factors influencing individuals’ intentions and behavior for organ donation are summarized, including: demographic factors, cultural factors, attitudes towards death and funeral, family influence, information accessibility for organ donation, distrust medical community and legislation for organ donation. In addition, two more factors, acceptance of brain death and effectiveness in receiving donation request, are associated with family consent to organ donation. Conclusion. This review highlights factors could influence individual’s intention and behavior for organ donation. Potential implications could be implemented base on the effect of these factors. Possible interventions, upon demographic characteristics, dealing with Chinese traditional concept and enhancing knowledge and exposure of organ donation, to Chinese population are discussed. Limitations of this systematic review are also mentioned.
published_or_final_version
Public Health
Master
Master of Public Health

Paper One reports a systematic review of qualitative literature involving bereaved families who were approached about organ donation at the end-of-life of their relative. The review aimed to understand the implications of the decision at least six-months after the bereavement. Fifteen studies were included in the review and were critically appraised using a quality appraisal tool. A meta-ethnographic approach yielded three themes: An ongoing relationship with the donor; The psychological impact of the decision; Support in grief. The findings are discussed in relation to the complicated grief literature. Paper Two reports a mixed-methods study, which utilised the Self-Regulation Model of Illness and Interpretative Phenomenological Analysis. People living with chronic kidney disease and pre-dialysis were surveyed (n=31) and interviewed (n=8) about their illness and treatment beliefs and experiences regarding pre-emptive living donor kidney transplantation. Responses suggested illness perceptions and treatment knowledge inform treatment preferences. Four master themes emerged from the qualitative analysis (My Kidney and I; Co-constructing Decisions; A Kidney Shared as a Problem Solved?; and Navigating the Unknown), which described the complexity the option of living donation may present to people. A desire for enhanced self-management information to delay illness progression was found.

Over the last few years, policies have been introduced in the UK which aim to improve organ transplantation rates by changing the way that potential organ donors are treated before death. Patients incapacitated due to catastrophic brain injury may now undergo ante-mortem donor optimisation procedures to facilitate deceased organ donation. As I identify in this thesis, the most significant ethical and legal problem with these policies is that they are not based on what the patient would have chosen for themselves in the specific circumstances. The policies identify and treat patients meeting certain clinical criteria as a group rather than the individuals, with their own viewpoints, that the law on best interests requires. They equate registration on the Organ Donation Register with ante-mortem donor optimisation procedures being in their best interests, despite registrants having neither been informed about nor given consent to ante-mortem interventions. The overarching claim I make in this thesis is that a system of specific advance consent is needed to provide a clear and unequivocal legal justification for ante-mortem donor optimisation procedures. The ethical foundation for this claim is autonomy, and this is the central theme running through all six chapters. I argue that autonomy should be incorporated into donor optimisation policy to promote the dignity and integrity of potential organ donors and to safeguard trust in the organ donation programme. I argue that a system of specific advance consent is needed as part of the duty of care owed to registrants on the Organ Donor Register and to facilitate the determination of the best interests of the potential organ donor. I argue that the state has not established the necessity of the current policy of non-consensual donor optimisation procedures and that they are under an ethical and legal obligation to introduce an autonomy-based framework for ante-mortem interventions to facilitate organ donation.

In this paper I examine the factors that affect the likelihood an individual is a registered organ donor. Unlike many studies which focus on subpopulations in specific regions, I utilize national data to get a broader assessment of individuals from around the country across a number of racial and religious classifications. Using a probit model and controlling for a variety of parameters, I find that some racial and religious variables are negatively and significantly associated with organ donor registration rates, while education and being female are positively associated with organ donor registration rates. I conclude by discussing the implications of my results and the potential for future research.

The purpose of the study was to provide a descriptive data analysis for program planners on knowledge, attitudes, and behavior regarding organ donation among undergraduate students enrolled at Ball State University. An 84-item questionnaire was administered to undergraduate students. The subjects were obtained from a convenient sample.The data were analyzed using mean and Pearson's r to answer the research questions. The overall attitudes of the subjects were positive (M=20.88 out of a possible 26). The knowledge of the subjects toward organ donation was low (M=9.98 out of a possible 22). About one half of the subjects indicated that they are organ donors, by indicating on the survey that they have signed an organ donor card or a similar document. Attitude regarding organ donation (r =.232) was found to be a greater influence on willingness to become an organ donor than was knowledge about organ donation (r = .106). Recommendations are to submit results to program planners to help create more effective organ donation recruitment.
Department of Physiology and Health Science

This thesis explores the ethics of conditional and directed deceased organ donation. It uses an empirical bioethics approach that uses empirical data to inform and enhance philosophical analysis. An initial philosophical analysis of the key ethical considerations was undertaken, and it is argued that the policy prohibiting most conditional and directed donations is wrong. The concept of altruism, in particular, is poorly conceived and applied in transplantation policy. Qualitative data obtained by interviewing relevant stakeholders are presented. The data suggest that although there are concerns about the consequences of accepting conditional and directed donations, many participants thought these donations should be accepted in some circumstances. The data also provide lines of argument against conditional and directed donations, and these are considered. Using this data, and making some reasonable assumptions, it is argued that it is better to accept conditional and directed donations than it is to reject them. The thesis culminates with 8 recommendations for policy regarding conditional and directed donations, and argues that a trial period of accepting these donations should be implemented so that the effects can be accurately observed.

The purpose of this study was to examine the effects of ethnic identification and ethnic portrayals in organ donation stories on the attitudes towards organ donation, the intent to register to become an organ donor, and the intent to discuss organ donation with friends and family. An online experiment was conducted where 202 undergraduate participants viewed one of three randomly selected ethnic portrayal conditions: African-American, Caucasian, and Hispanic. Following data collection, the participants were split along the median into high and low ethnic identification for the analysis. There were no significant interaction effects found between ethnic identification and the different ethnic portrayal in the message or significant effects of the ethnic portrayal on the dependent variables. There was a significant effect found on the impact of ethnic identification on attitudes towards organ donation.

Bibliography: leaves 45-49.
Black Africans continue to be the group with low consent for cadaveric organ donation However, the number of African Black patients with organ malfunctioning or failure continues to rise. Feelings associated with death and the novelty of the concept of organ donation to Blacks hinder the process of organ donation. Previous research indicate that although organ removal is not new in the Black African culture, its use for medical purposes is a recent development . This study explores factors that have affected the decision of Black African families regarding cadaveric organ donation . It focuses on families which have been requested to donate by the Groote Schuur Hospital (GSH) transplant co-ordinators from 1994 to 1996 Further, it examines whether the attitudes held at the time of the request have changed. An understanding of the factors and recommendations are offered at the end.

Cardiac transplantation is the treatment of choice for eligible patients with advanced heart failure; however, it is limited by a critical shortage of suitable organs from traditional brain-dead donors. Organs donated following circulatory death (DCD) have been used to successfully expand the pool of organs available for kidney, liver, and lung transplantation; however, concerns regarding the severity of injury sustained by the heart following withdrawal of life sustaining therapy have deterred the clinical transplantation of DCD hearts. Investigations aiming to optimize the resuscitation, preservation, and evaluation of DCD hearts may facilitate the development of an evidence based protocol for DCD heart transplantation that can be translated to the clinical area and expand the donor pool. Therefore, the objectives of this thesis are to develop a clinically relevant large animal model of DCD and gain a greater understanding regarding the physiologic impact of donor extubation on the DCD heart, demonstrate as a ‘proof-of-concept’ that utilizing an approach to donor heart resuscitation, preservation, and evaluation that is tailored to the DCD context can facilitate successful transplantation, and finally to investigate ways to optimize the resuscitation, preservation, and evaluation of DCD hearts for transplantation. The results of this thesis may then be used to inform the development of an evidence-based protocol for DCD heart transplantation that can be translated to the clinical area. The clinical adoption of such a protocol has the potential to expand the donor pool and improve outcomes for patients with end-stage heart failure.
May 2017

Thesis (M.A.)--Georgia State University, 2007.
Title from file title page. Cynthia Hoffner, committee chair; Yuki Fujioka, Holley Wilkin, committee members. Electronic text ( 81 p.) : digital, PDF file. Description based on contents viewed Nov. 8, 2007. Includes bibliographical references (p. 57-65).

The state of Maryland has been unsuccessful in achieving its goal of registering all of its population as organ donors. The purpose of this correlational study was to understand if allowing registered donors to remain anonymous would increase donor registration rates. The theoretical foundation of this study was the theory of planned behavior. Data were collected from the Motor Vehicle Administration of Maryland and the Division of Motor Vehicle of Virginia. The data were analyzed using regression displacement, interrupted time series analysis, auto correlation analysis, and Arima Box Jenkins methodology. According to the study findings, offering the option to remain anonymous and registering to be an organ donor with no heart icon on the driver's license did not have the immediate effect of encouraging more people to register as an organ donor. Parameter estimates from an Arima autoregression analysis did suggest that the impact of the removal of the heart icon may have a delayed impact, although data availability limited attempts at further investigation.

Current literature on public communication campaigns suggests that challenges and problems remain, even though generally the effectiveness of campaigns has increased in the past years. Challenges and problems are issue-specific and efforts put into influencing particular social behaviours through public communication campaigns have not been significantly successful. Although public communication campaigns are a popular method employed to influence social behaviours in many societies, campaign strategies inadequately consider the impact of cultural elements on social behaviours. The disappointing results through the use of campaigns are exacerbated by the difficulties faced in translating research observations to appropriate campaign strategies. In view of current challenges, this research examines public communication campaigns. Two main variables shaped this research ??? ???identity??? and ???culture???. The research postulated that a person???s identity influences his or her behaviour. It also argued that culture would impact on behaviour. The theoretical orientation drew on interpretivist perspectives. Using a comparative cross-cultural method, this research nominated the issues of organ donation and waste disposal behaviours in public places and the countries of Australia and Singapore for empirical study. Focus group research was employed. A total of sixteen focus groups were conducted ??? eight groups on organ donation (four in Sydney, Australia and four in Singapore) and eight groups on waste disposal behaviours (four in Sydney, Australia and four in Singapore). In line with the theoretical orientation, ???grounded theory??? was used to analyse the focus group transcripts. It is argued that a person???s decision to organ donation or waste disposal behaviour was intimately related to his or her identity. Cultural elements are critical constituents of identity. This is to say, cultural values, beliefs and attitudes have significant impact on social behaviours. These intricacies were made apparent when each issue was seen in the national contexts of Australia and Singapore. This research concludes that issues of identity can partly explain the type of decision a person makes about organ donation, and the kind of waste disposal behaviour a person enacts. It also argues that the effectiveness of campaign strategies can potentially be enhanced, if the strategies are responsive to people???s identities.

Organ donation continues to be low among ethnic minorities especially within the South Asian community, with a disproportionate number of South Asian people waiting for transplants because suitable matches are often found between people of same ethnic group. This thesis seeks to explore, identify and overcome the barriers to increase the number of South Asian organ donor registrants (ODR’s) and actual donors in the North West of England using and measuring the impact of different education approaches. A two phased, sequential explanatory mixed-methods approach was underpinned by health belief model theory. Phase 1: Questionnaire survey (n=907) and in-depth interviews (n=10) to understand South Asian beliefs, barriers and awareness of organ donation. Chi-squared tests and thematic analysis explored the existence of associations between outcomes, demographics and attitudes. Phase 2: Implementation of education approaches: (1) Education and training of Specialist Nurse for Organ Donation (SNOD) to develop skills/confidence to approach South Asian families for cadaver organ donation, measured by 12-month before/after audit of cadaver organs. (2) Education from the General Practioner’s (GP’s). (3) Peer education at South Asian community events, impact measured by number of new organ ODR’s. Out of 907 South Asian people sampled, 55% did not know about organ donation, they lacked knowledge, mistrusted health professionals, and were misinformed regarding religious objections, despite 88% having higher education. Over 24 months, 2874 South Asian new ODR’s were successfully recruited through peer education at 289 community events by a passionate, committed South Asian health professional. Recruitment of ODR within primary care was poor, GPs reluctant and lacking confidence to discuss organ donation, due to lack of time and uncertainty of religious issues. Targeted SNOD’s cultural education increased slightly the number of cadaver donors, as their confidence in approaching South Asian families increased. Formal training of SNODs and health professionals (GPs) with respect to culture and religious organ donation was scant and required a national cohesive approach. The research provides a deeper understanding of the reasons for the scarcity of South Asian organ donors gathered from what is currently the largest UK data set of South Asian perspectives. Peer education of the South Asian and collaboration with religious leaders is crucial to overcoming the shortage of organ donors in the future. However, the important and pivotal role played by a South Asian co-ordinator/networker to engage and sustain relationships with key ethnic community leaders cannot be overstated.

Organ transplantation is considered the optimal treatment for those in kidney failure, yet there is a growing gap between the global demand for transplantable organs and their supply. Transplant medicine has largely concentrated upon solving this problem by securing the willingness of the public to donate their organs after death. In the UK context, attention has been trained upon black and minority ethnic (‘BME’) groups, who make up 28% of the kidney transplant waiting list, yet just 4% of organ donors. Since transplant medicine has traditionally favoured sharing organs between similar ethnic groups, ‘BME’ patients have a greatly reduced chance of receiving a transplant, despite their higher levels of need. Searching for ways to solve this problem, policy and research responses have focused upon understanding the ‘cultural’ barriers which ‘BME’ ‘communities’ present for organ donation, with subsequent interventions aimed at promoting organ donation to these groups. In so doing, minority ethnic groups have been positioned as the cause of transplant inequalities, and handed responsibility for solving an issue originally created within the practices of transplant medicine itself. This study aims to resituate this ‘problem’ by focusing upon the institutional organ donation encounter: where potential donors are decided upon and families are requested to donate their relative’s organs. A multi-sited ethnographic approach was taken to examine the work involved in organ donation in two acute hospital Trusts in the North of England, and wider ‘community’ domains, such as religious temples. Narrative and observational methods were used to understand the experiences of Intensive Care staff and donation nurses involved in requesting donation from minority ethnic families, and those connected to the ‘problem’, such as religious leaders and minority ethnic transplant recipients. Findings reveal (‘BME’) organ donation to be an embedded, negotiated practice, which goes far beyond the willingness, or reluctance, of an individual to donate their organs after death. Instead, this study demonstrates that donation is dependent upon the practices of health professionals, who make decisions on the suitability of dead and dying patients for donation. Moreover, it shows how donation decisions are produced in the negotiations between families and health professionals over the medical diagnosis of death; in the discussions of the immediate and extended family of the potential donor; and by the ability of donation nurse to secure a family’s consent for donation. This study therefore illustrates how the ‘problem’ of ethnicity in organ donation is far from an isolated matter, created as a result of the ‘culture’ of ‘BME’ populations. Instead, it argues that the categories of the ‘BME organ donor’ and the ‘BME donor family’ – as problematic for donation – are maintained and reproduced within the very processes which make organ donation possible.

Introduction: The three ways of making a wish for organ donation known are donor registration, donation card and telling the relatives. The relatives always have to be consulted to know the last expressed wish. If the wish was unknown there is a presumed consent, but the relatives have veto and can refuse organ donation. A new proposal suggests that the veto should be removed.Aim: To identify and analyse the ethical considerations concerning decision making on organ donation with an emphasis on the role of relatives.Methods: A search for literature was made. Scientific articles, debate articles, constitutional texts, reports and other texts were selected. The selection of sources was performed on the basis of relevance for the aim of the study which means for answering the research questions.Results: Recurrent themes were identified in studies with an emphasis on the experiences of relatives who have been part of decision making on organ donation. The themes identified were: “incompetence to decide”, “disagreement”, “lack of information and support”, “comprehension of brain death” and “protection”. The themes, together with the reading of debate articles and other texts, formed the basis of arguments in favour of and against relatives’ right to veto.Conclusions: There are many factors influencing relatives in their decision concerning organ donation. There are strong arguments against the relatives’ right to veto. Donor registration and a sensitive approach in the conversation with relatives are important factors to increase the consent rate and fulfil the wish of the deceased.