Transplantation is the treatment of choice for the majority who experience severe organ failure. However, demand substantially exceeds supply of suitable organs; consequently, many people wait months or years to receive an organ. One person dies every week in Australia waiting for a kidney transplant (1), and in the United States, 20 people die every day waiting for a transplant of any kind (2). There is a wide variation in donation rates, with Australia having one of the lowest deceased organ donation rates in the developed world, with a rate of 13.8 donors per million population (dpmp) compared with, for example, Spain (36.6 dpmp) and the United States (25.5 dpmp) (3). Many countries have registries of deceased organ donation intentions and conduct campaigns to encourage family discussions to improve donation rates. However, few people register their intentions to donate with, currently, only 24% of Australians (4) and 28% of Americans (2), for example, registering their donation intention.
Reasons for the chronic shortage of deceased organ donations are unclear; there seems to be no lack of “in principle” public support for organ donation (5). Much research has gone into determining the factors associated with being an organ donor. These factors are as follows: higher education, higher socioeconomic status, and younger age (6–11), but what we do not know is why these factors are influential. Mixed methods approaches are increasingly used to assess preferences and attitudes based on the recognition that the ways in which people process and express their preferences are complex and can vary by context. Beliefs can be articulated through a narrative that can uncover the interaction of multiple influences. Qualitative research is able to capture these narratives and their context and, therefore, offers complementary information to that uncovered by quantitative surveys.
Previous qualitative research suggests that personal, cultural, and systemic factors influenced individuals decisions on being an organ donor (12–17), but many of these studies were conducted within minority groups in the United Kingdom, Canada, and the United States, and results are difficult to extrapolate to the Australian context.
The aim of this study, therefore, is to elicit Australian community attitudes and perspectives on deceased organ donation, specifically the decision to donate and the current organ donation consent system. In doing so, we hope to better understand the organ donation decision process and inform strategies to improve organ donation awareness, thereby potentially increasing donation rates.
We conducted 13 focus groups, with 114 participants in Sydney, Melbourne, Brisbane, and Adelaide between May to August 2010. Table 1 presents participant characteristics; 40% were from self-reported ethnic backgrounds, and this included participants from European, Asian, and Middle Eastern countries; 51% were women, 47% were in the 26- to 49-year age group; and 30% and 33% were in the 18 to 25 and 50+ age groups, respectively; 20% rated their attitude to organ donation as “negative” (1–4 of 10); 29 (25%) rated themselves as “neutral” (5–6 of 10); and 63 (55%) rated themselves as generally positive (7–10 of 10).
Most participants expressed an in-principle acceptance of organ donation and supported its place in Australia, but there were differences when it came to making a personal decision to be an organ donor. Three categories of themes emerged regarding the participants attitudes to organ donation (Fig. 1). First, participants held core internal beliefs regarding organ donation. Where more than one belief was held, they were weighed against others for decision making. For example, some respondents had concerns regarding loss of body dignity, but this was outweighed by their altruistic belief. How these preferences were actioned was filtered through the second theme of a framework of external and emotional influences and then third the institutional and policy context relevant to the respondent.
Core Internal Beliefs Underlying Decision
Participants’ attitudes regarding organ donation were based around a series of core beliefs. Many participants expressed beliefs likely to both encourage and discourage deceased organ donation.
Beliefs Likely to Encourage Donation
Beliefs likely to encourage donation include the following:
- Saving lives (recipient outcomes)—Overwhelmingly, participants indicated that organ donation had the ability to significantly save and improve the lives of others, and this was a major motivator to be an organ donor.
“…after seeing someone who’s had a transplant, knowing that you’ve actually helped them get back to living a normal life.” (Male, 50+ years group, Melbourne)
- Altruism (giving is good)—Many saw organ donation as a “good deed” and helping your “fellow man.”
“I think it’s a wonderful thing…being able to give the gift [of organ donation] to someone else.” (Female, 50+ years group, Adelaide)
Beliefs Likely to Discourage Donation
Beliefs likely to discourage donation include the following:
- Need for body wholeness—Some participants believed that they and their family member’s bodies should remain whole after death. This was sometimes linked to religious beliefs.
“The first thing that comes to mind is probably cutting up of the body, so it scares me, although you’re dead.” (Female, 26–49 years group, Sydney)
- Lack of body dignity for donors—Some believed that organ donors’ bodies were not treated with dignity during the organ donation process.
“There’s no dignity there, I guess, or there’s no sewing up afterwards It’s probably thrown in the bin ‘cause it’s all cut up.” (Female, 50+ years group, Melbourne)
- Fear of medical neglect for potential donors—Some participants believed that potential donors would be treated by medical personnel with less vigilance, than if they were a nondonor. “Medical personnel” included the wider medical team including paramedics.
“I’m not officially a donor … just because I’ve heard stories about if you die in a car accident they don’t save you ‘cause they want your organs. But if you’re not a donor then they’ll try and save you.” (Female, 18–25 years group, Sydney)
- Own organ viability—Some older participants believed that their organs were “not good enough,” and they were unable to donate.
“The only thing I think about—probably as you get older—whether they [organs] are good enough” (Female, 50+ years group, Sydney)
- Conditional donation/deserving recipient—Some participants questioned whether the allocation of donated organs was performed in a manner they thought appropriate.
“You can have anything I’ve got, but don’t waste it, as in a case recently a particular girl had three transplants…she didn’t give up those drugs.” (Male, 50+ years group, Brisbane)
External and Emotional Influences on Core Beliefs
We observed a range of external and emotional factors that were able to shift how participants weighted these core beliefs in the decision-making process to be an organ donor. These influencing factors were as follows:
- Family attitudes—For some participants, they felt obliged to respect their family’s wishes regarding donation, both in making their own decision to be a donor and when making decisions for others to donate, particularly when family opposed a participant’s generally positive disposition toward donation.
“Like my wife knows that if I die I want to give my organs, but she’s not so keen on it so I probably wouldn’t do it for her” (Male, 18–25 years group, Sydney)
- Knowledge and information—Many wanted more information regarding consent and the organ donation process such as how brain death is declared, how the organs are removed, and whether an open coffin is possible after organ donation.
“I don’t know enough about it. I don’t know what I don’t know. I’ve seen a bit here and there, but I’ve never learnt about it at school. It’s never been publicised, really. There’s no real driver. There’s no reason…” (Male, 26–49 years group, Melbourne)
- The media—The media, including television, radio, internet, news stories, and planned productions involving organ donation, were thought to generally create positive awareness about organ donation. Most participants could name a “famous” organ donor or recipient.
“The one that got me was the story with some young fellow who was in one of the Greek Islands whose family donated his organs…That hits home and reminds you that, maybe I should do something. So those stories - intermittently - once or twice a year - remind you of, maybe I should do something about it, ‘cause there’s a feel-good story.” (Male, 26–49 years group, Melbourne)
- Religion—Some participants mentioned religion as a barrier to organ donation. Body wholeness was the main barrier cited, as there was the perception that religious edict required the body to remain intact.
“We’ve got that religious belief…we’re born in this world the way we are and that’s how I want to leave it as well.” (Male, 18–25 years group, Melbourne)
- Grief—Many questioned their own ability or that of their loved ones to make a decision regarding organ donation in the midst of grief. Many felt leaving the final donation decision to next of kin was not “fair,” and the decision should be made well in advance to avoid this final “trauma.”
“…because you’d be grieving, and be sad. It would be hard, I hope I’d still say yes…thinking about my children…they’re so little…I hope I would still say yes.” (Female, 26–49 years group, Brisbane)
- Apathy—Despite being positive about organ donation, most participants had not “gotten around to registering.” Many thought that the “laid back” Australian way of life may be at odds with the existing Australian opt-in consent system.
“I agree that if you’re dead they’re no use to you at all so you might as well save someone else’s life.” Facilitator: “Have you actually registered?” “No, I haven’t, like to tell you the truth I haven’t thought about it that much. It hasn’t really come up before.” (Female, 18–25 years group, Melbourne)
- Fear—Including fear of their own mortality, fear of a lack of body wholeness and dignity, and fear of differing medical care. These fears strongly influenced the participants’ core beliefs about organ donation.
“…once you put that D down for donor, you can’t help think that some people just look at you like we look at a cow—here’s the rump, here’s the silverside… they start putting orders on what they want.” (Male, 26–49 years group, Sydney)
- An individual’s core beliefs regarding organ donation were filtered through these external and emotional influences before a decision was made, and these influencers had the ability to sway the balance in either direction. Many found the abundance of competing influencers difficult to decipher and, therefore, avoided making any decisions about being an organ donor.
Institutional and Policy Context
Any actions taken based on the personal decision as a result of the core beliefs and influences are also filtered through the prevailing institutional and policy context. Participants wanted more information regarding the organ donation process and overwhelmingly, a simpler consent system where their family or next of kin could not overrule their wishes for organ donation.
“It is the last thing, really, you get to decide on and they’re taking that away from you, ‘cause if your parents are religious and you’re not…that’s your last decision and they’ve just taken it away from you.” (Male, 18–25 years group, Sydney)
Many believed that the current consent system was complex and yet vague. There were strong advocates both in favor of and against the idea of a presumed consent system in Australia. Many believed that a presumed system would improve donation rates and would be acceptable to Australians if it was presented in a positive manner. Participants had other suggestions for improving the consent system including a compulsory choice system, where everyone would register their choice to be a donor or not; incorporating consent into the National Census; and providing education on organ donation in high school curricula, proactive media advertising, and promotion of organ donation through general practitioners.
“I’d be completely for It [presumed consent system], because you still, as a human being have the right to choose. They’ve just tried to make it a little bit more simple.” (Female, 50+ years group, Adelaide)
Direct payments to encourage organ donation were not seen as appropriate; however, indirect methods of encouragement, such as charitable donations or reimbursement of funeral expenses were viewed more favorably by some participants. There was also general agreement that organ donors warranted greater public recognition, e.g., by public memorials in prominent places around Australia.
“It shouldn’t be commercial. It should be altruistic. You should want to do it because it’s a good thing to do, not because you get paid 10grand for your kidney.” (Male, 26–49 years group, Brisbane)
“Like maybe at the hospital there’s a wall with names engraved in it and its people who have helped do something, like organ donors” (Male, 18–25 years group Sydney).
In focus groups with the Australian population, we found that there were core beliefs on which participants based their decision about donation. These included beliefs about altruism, recipient outcomes, loss of body dignity and wholeness, differing medical care, viability of their own organs, and organ allocation. The extent to which these beliefs ultimately affected the participants’ final decisions was influenced by a range of external, emotional, and institutional factors. Factors having the greatest influence over an individual’s donation decision were family attitudes, knowledge, information, religion, media stories, grief, apathy, and fear. The structure of the local organ donation system, including consent systems and incentives, either supported or created barriers for an individual to act on their personal decision.
At every stage in the organ donation decision process, there are potential barriers to donation. However, in describing these barriers, opportunities exist for interventions to increase donation rates. Almost all participants suggested more available and promoted information on the organ donation process, such as the declaration of brain death, and the current consent system would be helpful. They believed that this would assist in overcoming some “urban myths” that exist, dispel fear surrounding the process of organ donation, and improve confidence in the process and the medical team. Respondents also suggested that organ donation be included in the high school curriculum. Participants indicated that efforts should continue to increase the number of positive media stories about organ donation and recipient outcomes to help influence core beliefs of Australians with respect to organ donation, and participants relied heavily on the media for their information on organ donation, and this should continue to be the best avenue for the promotion of organ donation in the community. Accurate information on the official stance of major religions on organ donation should also be promoted, especially as most of the prominent Australian religions have no objections to organ dona tion (18). Direct payment as an incentive was generally met with scepticism by the participants. However, other means of encouragement (e.g., reimbursement of funeral expenses or charitable donations) were viewed somewhat more favorably. All agreed organ donors should receive more recognition for their contribution to society. Suggestions from participants included public memorials in prominent places in Australia, providing places to pay respects to donors and raising awareness regarding organ donation in general. All these suggestions may encourage many to have a positive attitude to organ donation but more importantly act on their attitude and register as a donor.
Overwhelmingly, participants expressed disbelief that the current system allowed individuals to register their willingness to donate their organs, but potentially this could be overruled, on death, by the next of kin. The National Clinical Taskforce on Organ and Tissue Donation report released in 2007 identified as an area of priority than need for a better understanding of community attitudes “to ensure that clinicians and policy makers are in step with community values” (19). Our study suggests that the current organ donation consent system does not concord with attitudes of everyday Australians. This discord warrants further investigation to ensure policies are in line with community values. A presumed, or compulsory choice, consent system for organ donation as suggested by the participants could possibly be explored.
Previous qualitative studies of attitudes to organ donation suggest that religion (17), cultural beliefs (14), superstitions, (20) preference for body wholeness after death (15, 21), mistrust of the medical system (16, 21), and strong family or social objection (12, 21) to organ donation all influence the decision to be an organ donor. Similarly, we found that body dignity, body wholeness, and family were major influencing factors. However, unlike these previous studies, which were generally conducted in minority groups, we found religion and cultural influences did not exert strong influences on organ donation decisions. When cited as an influence, they were generally couched as negative influences. None of the altruistic reasons for donation were attributed to a religion or religious cause.
As this is a study of the general community of Australia, it may not be possible to fully extrapolate the results to other communities. It is possible though, to use the information to further understand the decision-making process for organ donation and for readers to determine the similarities and differences between their communities and the Australian population in drawing conclusions for their target groups.
We were, also, unable to send the preliminary findings to participants due to confidentiality agreements between the market research recruiting company and the participants. However, we used researcher triangulation. Authors M.J.I., A.T., and K.H. debriefed after each focus group, coded the data, and discussed their coding framework. Also, verbatim quotations have been provided for each theme.
Despite all efforts to recruit more participants with “negative” views regarding organ donation, more participants had a self-declared “positive” rather than a “negative” view. We addressed this imbalance by using negative case analysis to explore the “negative” comments made by all participants. This imbalance in positive and negative views may, however, reflect the distribution of attitudes in the general population, especially when it has been reported that there is no shortage of in-principle support for organ donation (6). The next step should be studies carried out both in Australia and internationally to explore community support for possible strategies to improve organ donation rates.
There are opportunities for interventions along the continuum of the decision-making process regarding being an organ donor. These include improving confidence in the medical team by providing accurate information on the organ donation consent system, medical processes and increasing positive media stories on organ donation including accurate information on each religion’s stance on organ donation. Strategies for greater public recognition for organ donors should be explored. Finally, our findings suggest that aspects of the current local organ donation consent system may be out of step with community values, and reforms should be discussed and debated publicly.
MATERIALS AND METHODS
We conducted focus groups in four Australian States (New South Wales, Queensland, Victoria, and South Australia). Participants already registered with a market research company in each state were contacted through telephone by the company and invited to participate in our focus groups. Participants were eligible if they were English speaking, aged 18 to 80 years, and able to give informed consent. They were purposively sampled to enable each group to reflect a balance of numbers between male and female participants, a variety of cultural backgrounds, and varying views on organ donation based on responses to the following question “on a scale of 1 to 10, how would you rate your attitude to organ donation with one being completely disagree and ten being completely agree?” We conducted four separate groups for each of the18 to 25 and 50+ age groups and five focus groups for those aged 26 to 49 years. Participants were offered reimbursement for their time and travel expenses. Approval was obtained from the University of Sydney, Human Research Ethics Committee.
All focus groups lasted 2 hours and were facilitated by one of the authors (A.T. or M.J.I.) who had no contact with the participants before the study. An observer (A.T. and K.H.) recorded field notes on group dynamics and interactions, participant characteristics, body language, and the context surrounding the discussion. A preliminary schedule was developed, based on a systematic review of the literature (22) and discussion among the research team (see Appendix A, SDC,http://links.lww.com/TP/A654). Each focus group had three phases: (1) preliminary questions about the participants’ thoughts and attitudes to deceased organ donation, (2) group discussion around factors that would influence decisions to be an organ donor, and (3) an individual ranking exercise of factors identified from group discussion, using a modified nominal group technique (results reported elsewhere). The schedule is available on request. All sessions were recorded and transcribed verbatim. We collected data until data saturation was reached.
Transcripts were entered into hyperRESEARCH (ResearchWare Inc., Massachusetts, Version 2.8.3). Transcripts were reviewed line-by-line by M.J.I., K.H., and A.T. who searched for concepts, themes, and ideas and developed a preliminary coding scheme using a grounded theory approach (23), incorporating negative case analysis (24). Transcripts were read and coded by the three authors independently who compared and discussed their individual coding. After discussion, among the broader research team, MI refined the coding structure, until it captured all concepts about community attitudes on organ donation.
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