Exploring donation decisions: Beliefs and preferences for organ donation in Australia

We explored common beliefs and preferences for posthumous and living organ donation in Australia where organ donation rates are low and little research exists. Content analysis of discussions revealed the advantage of prolonging/saving life whereas disadvantages differed according to donation context. A range of people/groups perceived to approve and disapprove of donation were identified. Barriers for posthumous donation included a family’s objection, with the type of organ needed important for living donation. Motivators included knowledge about potential organ recipients. Donation preferences favored loved ones, with weaker preferences for recipients who were perceived as morally questionable or responsible for their illness.

Determining the psychosocial predictors of living, living-related, and posthumous organ donation

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.

Are organ donation communication decisions reasoned or reactive? A test of the utility of an augmented Theory of Planned Behaviour with the Prototype/Willingness Model

Objectives: To explore whether people's organ donation consent decisions occur via a reasoned and/or social reaction pathway. --------- Design: We examined prospectively students' and community members' decisions to register consent on a donor register and discuss organ donation wishes with family. --------- Method: Participants completed items assessing theory of planned behaviour (TPB; attitude, subjective norm, perceived behavioural control (PBC)), prototype/willingness model (PWM; donor prototype favourability/similarity, past behaviour), and proposed additional influences (moral norm, self-identity, recipient prototypes) for registering (N=339) and discussing (N=315) intentions/willingness. Participants self-reported their registering (N=177) and discussing (N=166) behaviour 1 month later. The utility of the (1) TPB, (2) PWM, (3) augmented TPB with PWM, and (4) augmented TPB with PWM and extensions was tested using structural equation modelling for registering and discussing intentions/willingness, and logistic regression for behaviour. --------- Results: While the TPB proved a more parsimonious model, fit indices suggested that the other proposed models offered viable options, explaining greater variance in communication intentions/willingness. The TPB, augmented TPB with PWM, and extended augmented TPB with PWM best explained registering and discussing decisions. The proposed and revised PWM also proved an adequate fit for discussing decisions. Respondents with stronger intentions (and PBC for registering) had a higher likelihood of registering and discussing. --------- Conclusions: People's decisions to communicate donation wishes may be better explained via a reasoned pathway (especially for registering); however, discussing involves more reactive elements. The role of moral norm, self-identity, and prototypes as influences predicting communication decisions were highlighted also.

Overcoming the organ donation dilemma

A book review of: Jason T. Siegel and Eusebio M. Alvaro Understanding organ donation: Applied behavioral science perspectives. Wiley-Blackwell, 2010, 392 pp. US$124.95 (hbk); ISBN 978-1-4051-9213-2

Do the myths still exist? Revisiting people’s negative beliefs about organ donation upon death

The prevalence of myths preventing people partial to donation in Australia from consenting is unknown. Respondents (N = 468: 381 donors, 26 non-donors, 61 undecided) were surveyed about their (negative) donation beliefs. Approximately 30% of donors were neutral or supported negative beliefs about organ allocation, especially donation to undesirable organ recipients and a black market organ trade. Confusion about brain death, lack of family and religious support, and discomfort with donation were negative beliefs endorsed by some respondents irrespective of donor preference. Proportionally, donors had greater trust in hospitals/doctors than other groups. Some myths still exist but may vary with donation preference.

A test of three interventions to promote people's communication of their consent for organ donation

People's decision to join an organ donor registry and have a discussion with family about their organ donation preference increases the likelihood that their family will consent to donation of their organs. This study explores the effectiveness of three interventions compared to a control condition to increase individual consent (registering and discussing donation wishes) for organ donation. Australian residents who had not previously communicated their consent (N = 177) were randomly allocated to complete an online survey representing either an extended theory of planned behaviour motivational intervention (strengthening intention via attitudes, subjective norms, control, moral norms and identity), a volitional intervention using constructs from the health action process approach (strengthening the translation of intentions into action using action plans and coping plans), a combined motivational and volitional intervention, or a control condition. Registering, but not discussing, intentions increased in the motivational compared to non-motivational conditions. For joining the organ donor registry, the combination of strengthening intentions (motivational) as well as forming specific action (when, where, how, and with whom for discussing) and coping (listing potential obstacles and how these may be overcome) plans (volitional) resulted in significantly higher rates of self-reported behaviour. There was no evidence for this effect on discussion.

Donor identification and consent for deceased organ donation: summary of NICE guidance.

Organ donation plays a major role in the management of patients with single organ failure of the kidneys, liver, pancreas, heart, or lung, or with combined organ failure of heart and lung (such as in cystic fibrosis) or of kidney and pancreas (such as in diabetes). A shortage of transplant organs has resulted in long waits for transplantation. Currently about 500 people in the United Kingdom die each year because of a shortage of donated organs,1 and at 31 March 2011 almost 7000 patients were waiting for a kidney transplant1 and would be having costly dialysis with serious morbidity and impact on quality of life. This shortage of organs is partly the result of relatively low numbers of road traffic deaths (lower than in many countries) but is also the result of inefficiencies in the donor identification and consent processes. This article summarises the most recent recommendations from the National Institute for Health and Clinical Excellence (NICE) on improving donor identification and consent rates for deceased organ donation.2

How Critical Care Nurses' Role and Education Affect Organ Donation

Organ and tissue dysfunction and failure cause high mortality rates around the world. Tissue and organs transplantation is an established, cost-effective, life-saving treatment for patients with organ failure. However, there is a large gap between the need for and the supply of donor organs. Acute and critical care nurses have a central role in the organ donation process, from identifying and assessing potential donors and supporting their families to involvement in logistics. Nurses with an in-depth knowledge of donation understand its clinical and technical aspects as well as the moral and legal considerations. Nurses have a major role to play in tackling organ and tissue shortages. Such a role cannot be adequately performed if nurses are not fully educated about donation and transplant. Such education could be incorporated into mandatory training and completed by all nurses.

Organ donation in Switzerland: a survey on marginal or extended criteria donors (ECD) from 1998 to 2009

The widening gap between the numbers of patients on the waiting list for organ transplantation and the insufficient numbers of organ donors results in the use of "critical" donors, so-called marginal donors or extended criteria donors. Data concerning the evaluation of extended criteria donors (ECD) in Switzerland are sparse.