Student and community perceptions about organ donors, non-donors and transplant recipients

Despite efforts to encourage organ donation, low organ donation rates in Australia and other Western nations do not meet the demand for transplantable organs. One influence on organ donation decision-making yet to be fully explored is that of prototype perceptions about organ donors, non-donors, and transplant recipients. We conducted focus groups and interviews with 54 student and community participants to explore these perceptions of donors and non-donors in a living and posthumous context, as well as transplant recipients. Using content and thematic analysis, transcripts were analysed for consistently emerging themes. Donors were generally perceived positively as altruistic and giving and as ordinary people; however, some participants questioned the motives of living anonymous donors. Non-donors were commonly viewed negatively as self-absorbed and unaware, with living-related non-donors particularly perceived as cold-hearted and weak. Transplant recipients were generally viewed sympathetically (unfortunate and unwell); however, many participants also expressed negative views about transplant recipients as responsible for their predicament, depending upon the type of organ transplant needed. To encourage people’s willingness to donate their organs, it is crucial to understand the extent to which these perceptions influence organ donation decisions. Donors, non-donors, and recipients 3 Student and Community Perceptions about Organ Donors, Non-donors, and Transplant Recipients Introduction In Australia, as in other Westernized nations, organ donation rates do not meet the demand for transplantable organs (Australian and New Zealand Organ Donor [ANZOD] Registry, 2006; Gabel, 2006). Australia has one of the lowest donation rates in the world (10 donors per million population) compared to other countries such as Spain (35.1 donors per million population), the United States (21.4 donors per million population) and the United Kingdom (10.7 donors per million population) (ANZOD Registry, 2006). Despite reported public support for organ donation and the availability of both living and posthumous organ sources, many people still die waiting for a transplant (approximately 20% of the 2000 Australians needing a transplant will die waiting) (Health Insurance Commission, 2005; Pfizer Australia, 2004). Much research has examined the discrepancy between positive attitudes toward organ donation but low rates of donation and this gap between beliefs and action has been attributed to many factors. For instance, even if an individual wishes to donate their organs upon their death, only approximately 1% of the population will die in circumstances facilitating donation (ANZOD Registry, 2006). Further, many individuals have not discussed their donation wishes with family members who are consulted to give authority for organ donation and as a consequence family members may refuse consent to donate (Matthew, 2004; Rodrigue, Cornell, & Howard, 2006). Donation decisions are also thought to be influenced by factors including: confusion about the concept of brain death (Siminoff, Burant, & Youngner, 2004), death anxiety (Robbins, 1990), fear of bodily mutilation, mistrust of the medical system and receiving inadequate medical care (Belk, 1990; Parisi & Katz, 1986), whether or not the donor is living or dead when donation Donors, non-donors, and recipients 4 occurs (Boulware, Ratner, Sosa, Cooper, LaVeist, & Powe, 2002), the specific organs to be donated (Hayward & Madill, 2003), and the relationship between the donor and recipient (Crombie & Franklin, 2006; Skowronski, 1997). In a more predictive capacity, the influence of factors such as gender, age, ethnicity, religiosity, previous experience (Landolt et al., 2001; Radecki & Jaccard, 1997), knowledge (Horton & Horton, 1990), altruistic tendency (Morgan & Miller, 2002), and beliefs and attitudes (Boulware et al., 2002; Skowronski, 1997) on donation decisions have been examined. It is evident that there are a multitude of possible influences on donation decisions which vary across individuals, culture, and contexts. Although these factors go some way towards explaining organ donation decisions, they do not entirely account for why individuals choose or refuse to donate their organs, evidenced by the large amounts of unexplained variance in behaviour reported in quantitative studies (see Feeley, 2007; Radecki & Jaccard, 1997, for a review). As a result, further exploration of possible influences on donation decisions is still needed. One possible influence on donation decisions, that has yet to be explored fully in the organ donation context, is that of prototype perceptions (from the prototype/willingness model, see Gibbons, Gerrard, & McCoy, 1995). Prototypes can be defined as an individual’s social image (or perception) of the type of person who engages in a specified behaviour (e.g., the typical image of a smoker) (Gibbons, Gerrard, Blanton, & Russell, 1998). In the context of organ donation, judgements about the characteristics of the type of person who does and does not donate their organs, as well as judgements about the type of person benefiting from organ donation (i.e., an organ transplant recipient), may be influential in an individual’s decision to donate their organs. Further, the individual’s favourable or unfavourable evaluation of the image (prototype favourability) and judgement of the similarity of the image to themselves (prototype similarity) are thought to influence willingness to engage in behaviour (Gibbons, Gerrard, & Donors, non-donors, and recipients 5 McCoy, 1995). In the context of organ donation, then, if an individual has a favourable image of the ‘typical’ person who donates their organs, and perceives themselves as similar to the ‘typical’ organ donor, they may be more willing to be an organ donor. The importance of prototypes in the organ donation context is suggested by previous research investigating social representations of organ donors and non-donors (Lauri & Lauri, 2005), and organ allocation preferences (Browning & Thomas, 2001). Examining social representations of organ donors and non-donors, Lauri and Lauri (2005) found that the characteristics ascribed to organ donors were young, a public figure, and caring, whereas nondonors were described as conservative, uncaring, afraid, and uninformed. While there is a paucity of research about perceptions of posthumous organ donors and non-donors, to the authors’ knowledge, there is also a distinct lack or research about perceptions of living donors and nondonors. An examination of the literature also reveals that there is little research about perceptions of transplant recipients. Drawing on studies examining the organ allocation preferences of the general public, it is evident that many individuals have preconceived notions about recipients’ deservingness of the organs allocated to them and that the perceived fairness of the organ allocation process impacts upon donation decisions (Morgan, Harrison, Afifi, Long, & Stephenson, 2008; Peters, Kittur, McGaw, First, & Nelson, 1996). Specifically, participants have expressed concern that their organs would be given to alcoholics, criminals, or undesirable people and believed that these recipients did not deserve their organs either because of their character or because they had brought their illness upon themselves. Lower priority for transplantation has also been allocated to individuals with a history of smoking (Sears, Marhefka, Rodrigue, & Campbell, 2000), alcoholism (Rodrigue, Hoffman, Park, & Sears, 1998), and drug or substance use (Neuberger, 1999) in ranking tasks for studies examining organ allocation decisions. Donors, non-donors, and recipients 6 As noted above, there are two key areas where there is a distinct lack of research. First, existing research has not explored perceptions of posthumous or living organ donors and nondonors in any depth. Awareness of the commonly held perceptions of organ donors and nondonors will increase our understanding of what comprises these perceptions and can provide insight into the degree to which these perceptions are favourable. This awareness may also provide an indication of whether or not individuals perceive themselves to be similar to donors and non-donors, an evaluation which may ultimately inform their willingness to donate their organs. Further, given that living donation is increasingly used as a method to supplement organ resources (Gruessner & Sutherland, 2002; NHMRC, 2006), it is important to understand perceptions of donors and non-donors in this context also. Second, the majority of research has examined organ allocation priorities rather than general perceptions of transplant recipients. Exploring such general perceptions is important to determine if the negative beliefs about transplant recipients perceived to be responsible for their illness are generated spontaneously and are still salient without using a scenario-based method or a pre-determined ranking exercise (as is currently the practice in research exploring organ allocation decisions). Further, such perceptions of transplant recipients have the potential to influence organ allocation policy, particularly if some individuals are viewed as more deserving of available organs than others (Browning & Thomas, 2001; Morgan et al., 2008; Ubel & Lowenstein, 1996). The Current Study Given that there is little research, particularly in Australia, about the perceptions of organ donors and non-donors in a living and posthumous context, and also transplant recipients, we chose a qualitative, focus group methodology to conduct a preliminary exploration of these perceptions. Focus group methodology was thought to be appropriate as it allows an initial, indepth exploration of beliefs in areas where there has been little previous research conducted and Donors, non-donors, and recipients 7 it encourages discussion of socially shared views (Krueger, 1994; W