‘Nudging’ registration as an organ donor: Implications of changes in choice contexts for socio-cultural groups

Introduction

Traditionally there have been three main policy levers available to governments to promote civic goals, such as those relating to health, global warming, taxation, charitable giving and community cohesion. These involve banning certain activities such as prohibiting smoking in public places, using financial incentives/penalties such as increasing taxation on alcohol to reduce its consumption and employing educational approaches to change behaviours through increasing knowledge. However these approaches alone are recognised to be inadequate. A fundamentally different strategy was outlined by Richard H Thaler and Carl R Sunstein (T&S) in their book Nudge: Improving Decisions about Health, Wealth and Happiness (2008). Nudge draws on behavioural economics and social psychology to explain why people behave in ways that deviate from rationality as defined by classical economics. It therefore aims to cue people to make what ‘experts’ regard as ‘better’ choices in terms of their own health and welfare and the collective good. This is achieved by ‘nudging’ choices through shaping the choice contexts in which decisions are made so as to achieve desired outcomes.

Nudge strategies outlined by T&S mainly relate to making people wealthier and more secure and promoting health through simplifying choices. An example given of a Nudge-based strategy in the health field is the introduction of changes to the system of deceased organ donation with the aim of increasing rates of registration as a donor. This article examines the potential implications of this strategy for choices made by minority ethnic groups. We conceptualise ethnicity drawing on Bourdieu’s concept of habitus. This approach transcends the dualisms of agency and structure and views individuals’ choices as socially bounded, occurring within the constraints of dispositions that are acquired and internalised through past experience. Bourdieu and Wacquant (1992: 16) described habitus as comprising ‘a set of historical relations “deposited” within individual bodies in the form of mental and corporeal schemata of perception, appreciation and action’. Bourdieu (1977: 78) also emphasised that whereas individuals’ habitus is initially acquired through socialisation there is a possibility of continuous transformations in the structured dispositions of the habitus within changing contexts of social practices. Thus whereas there are commonalities among members of a social class based on their shared situations and experiences, variations may also arise from the unique experience of individuals within a particular social grouping.

This article first examines the assumptions and limitations of Nudge in more detail and then employs empirical data to investigate the ways in which the habitus of minority ethnic groups constrains Nudge strategies that are designed to increase rates of deceased donation. Focus group discussions identify how continuing low knowledge of donation and registration as a donor among many members of minority ethnic groups reflects a lack of perceived relevance. Moreover, affective responses to donation are linked with the internalisation of past and prevailing externalised structures and reflect varying faith and cultural beliefs concerning the body. This leads to a consideration of the adequacy of the Nudge approach to cueing behaviour by focusing on the prevailing choice context and of experts’ assessment of behaviour in individuals’ best interests.

Background

Methods

Our analysis draws on empirical data from 22 focus groups conducted with Black and South Asian minority ethnic groups in the UK. Focus groups were chosen rather than individual interviews as this group context is often helpful in discussing a topic that people know little about and in exploring the ways in which people’s experiences and circumstances influence their views and practices.

The focus groups comprised 228 participants recruited from six ethnic/faith groups: Caribbean Christian (27), Nigerian Christian (32), Indian Hindu (39), Indian Sikh (40), Pakistani Muslim (43) and Bangladeshi Muslim (47). For each ethnic/faith group there were separate focus groups for younger (18–40 years) and older participants (aged 41 years and over) to permit analysis of differences in their habitus. For older South Asian participants separate groups were also held for men and women to reduce possible gender-based influences in discussing this sensitive topic. This increased the numbers of participants in these ethnic/faith groups.

Recruitment to focus groups took place in seven multi-ethnic boroughs in London and was conducted by employees of a specialist agency who shared the same ethnicity and faith as the target populations. Recruitment occurred on a door-to-door basis, in the street, at places of worship and community organisations, and through the snowball method. Two-thirds of those recruited attended the focus groups. The groups were held in afternoons and early evenings at local community centres. They were mainly facilitated by the two researchers (CK, SD), with one researcher plus a fieldworker fluent in the local community language facilitating groups of older Asian participants. At the start of the group the researcher provided an overview of the session and explained how the focus group would proceed. Written consent was obtained and a short questionnaire completed to provide summary socio-demographic information. Sessions lasted between 60 and 90 minutes. Discussion was guided by a topic guide that was modified following the first session in view of participants’ limited knowledge in this area. Factual information about donation and the disparities among minority ethnic groups and was provided at the beginning of each session to prompt more detailed discussion. We also introduced brief vignettes that required participants to consider how they might behave in particular situations or how they would advise a friend. Their design was assisted by our lay advisory group and successfully stimulated group discussion (see Box 1). We originally aimed to also elicit views of a shift to presumed consent but the length of sessions and participants’ limited knowledge did not allow discussion of this aspect apart from a general view of the importance of being free to choose.

OPEN IN VIEWER

Box 1.

Vignette scenarios relating to registering as a donor.

Vignette 1: [appropriate male name – e.g. Yasir, Anup, Deepak] has seen on the news that somebody’s life was saved after having a kidney transplant. This has made him want to donate his organs after his death.

Probes: e.g. How should [name] go about registering as an organ donor? What would influence you to donate your organs? What would influence you to NOT donate your organs?

Vignette 2: [appropriate female name – e.g. Safir, Raveena, Rani] is thinking of joining the organ donor register because she won’t need her organs after she has died. Her brother [male name] says that he doesn’t really see the point because she won’t benefit from donating her organs.

Probes: e.g. Do you share [male name]’s view? Do you share [female name]’s view that she won’t need her organs after she’s died? Who in your opinion benefits from organ donation (individual benefit, NHS benefits by reducing waiting lists, society benefit – doing a good deed).

All sessions were audio recorded with participants’ consent and fully transcribed with initial analysis and data collection occurring concurrently. Transcripts were imported into NVivo and initial open coding was followed by grouping into larger themes. Themes were then charted using a matrix approach to enable comparisons both between and within ethnic/faith groups. Themes and interpretations were discussed among the authors and further confirmed by re-reading the transcripts.

Findings

The 22 focus groups involved 228 participants of whom 79% were born outside the UK, reflecting a pattern typical of multi-ethnic inner city areas. Altogether 29% were unemployed, retired, carers or students, and 71% were employed and worked predominately in semi-skilled occupations, such as cab drivers, security guards, teaching and kitchen assistants. For the participants in this study minority ethnic status was often combined with disadvantaged socio-economic position, although several younger people of Indian and Pakistani origin and Indian Hindu women were engaged in or training for professional or managerial occupations.

Knowledge and practices

Whereas individuals require knowledge of the organ donation system to exercise their libertarian right to choose, the majority of our focus group participants knew little about donation. When asked they initially responded by talking positively in affective terms about donation and transplantation as ‘a good thing’, as doing ‘a good deed’ and ‘saving the life of another’. In discussing the first vignette participants again often referred to their lack of knowledge:

I don’t have knowledge on it to be honest. I’ve never looked it up to be honest, nothing really – I don’t know anything about it all, all I know is that they take things out of your body. (Bengali Muslim woman, 18–40 years)

In response to a question about where they would register as a donor several participants drew on common sense knowledge and surmised that this would be at local hospitals or when attending primary care. A few also added that they would like to discuss organ donation with a nurse or doctor at the practice before registering as this was ‘a big thing’ and ‘an important decision’, thus identifying notions of reflective decision-making.

Minority ethnic groups’ knowledge about deceased donation has been shown to be rather lower than for the white population (Morgan et al., 2006). This has occurred despite NHS Blood and Transplant giving considerable emphasis to informing and educating minority ethnic groups about organ donation. The first national ethnically targeted campaign occurred in 1999 and four further minority ethnic campaigns have since been undertaken, with the 2010/2011 campaign ongoing at the time of the focus groups (Sims et al., 2012). A few focus group participants reported having seen posters and leaflets but the content of their messages appeared to have ‘passed them by’:

… you see leaflets and cards in everywhere like surgeries, and you don’t really give it that much importance. (Bengali Muslim woman, 18–40)

Yes exactly the thought [of registering as a donor] has been there when you’ve read a poster or something but as soon as you walk away from that poster … as soon it comes in it goes out that it … (Indian Sikh man, 18–40)

Further discussion indicated that these messages did not link with their own lived experience and existing stock of knowledge that serves as an interpretive framework. Older participants often explained that donation and transplantation were not part of their childhood experience or culture and viewed this as affecting their own engagement with the topic, thus acknowledging the influence of their early habitus:

We don’t have much experience in our community doing anything like that [organ donation]. I never heard anything. (Pakistani Muslim man, 41+ years)

So it’s not part of my culture, the circumstances in which I was brought up, that more or less would have prevent me from even giving it a thought. (Caribbean Christian man, 41+)

Younger participants from the Black community often linked their lack of awareness of deceased donation with their structural position and perception of being marginalised in the society:

… people in the UK, like Africans in the UK, Caribbeans in the UK, Asians in the UK, fine, they’ve been in the UK, they’ve heard about it, they’ve seen what is from across the road. They’re not on the same side as like the whites in the UK that kind of grew up in the whole thing. So they are still watching over it from the other side of the fence. Yes they are seeing it but it’s something that has not really, is not really part of them, their lives or completely accepted. They see it happening, fine, but it’s still is a strange process. (Nigerian Christian man, 18–40)

Participants of Caribbean origin and Nigerian women also commented on what they perceived as the absence of Black people and minority ethnic groups in narratives of transplantation in the media, which appeared to reduce their personal relevance. Moreover, when minority ethnic groups were depicted this was sometimes interpreted through a particular cultural frame that did not convey intended meanings. For example, when shown 2010/2011 campaign posters some male Nigerian participants did not understand why there was an image of a Black male patient who was looking very sick and dressed in a hospital gown with a cannula in his neck. Further discussion indicated that this was because organ donation was regarded by members of their community as primarily a ‘white issue’, with the assumption that white people are not as strong and therefore have a greater need for transplantation:

So naturally the thing is, Black people, we don’t believe in it [deceased donation], because we believe we are strong. (Nigerian Christian man, 18–40)

Thus for many people their past experience did not resonate with organ donation messages, while for many in the Black community this was often reinforced by perceptions of being an outsider to the wider society and its concerns. However other participants, particularly those of Sikh and Hindu faiths, were aware of organ donation and had no particular concerns but described their lack of motivation to join the ODR as this did not fit with their busy lives and competing priorities:

Our lifestyle is such that you put it aside and think you will do it one day but you don’t actually get round to do it. (Indian Hindu woman, 41+)

… if someone said to me right here’s the form I would do it. But I think, again, just time, just going out, there are more important things for me to do. (Indian Sikh man, 18–40)

This small group were therefore characterised by inertia whereas the majority of participants were not aware of the donation system and its requirements.

In terms of registration, among all 228 participants the only ones who were sure they had reached an action stage and joined the ODR were a group of four Hindu women who held professional or higher managerial occupations. They became aware of donation following participation in a cord blood donation project and after discussion with their partners decided to join the ODR. However it was notable that several participants from different minority ethnic groups were uncertain whether they had ticked the appropriate box indicating they wished to join the ODR when completing a form for a totally different purpose. These participants had not fully understood the meaning of the question but thought that all questions required an answer. They had therefore probably responded in terms of rapid affective decision-making and were not able to recall their response despite its potential longer term implications.

Affective responses

It is difficult to differentiate precisely between reflective and affective responses to deceased donation, for as T&S (2008) noted initial affective responses may influence subsequent reflective decision-making. The few studies that have aimed to identify the relative importance of these elements identify a complex pattern, with the communication of decisions often initially explained in terms of a reasoned pathway whereas subsequent discussion elicits more reactive elements (Hyde and White, 2010; Morgan et al., 2008). However, the second vignette elicited a range of responses that appeared to be mainly triggered by the focus group discussion and were thus likely to be mainly of an affective nature.

Discussion

The focus group discussions identified a number of themes that were common among most members of specific ethnic/faith groups, reflecting the influence of objective structures on dispositions and practices. This included the absence of a system of deceased donation in their home country that was believed by many to influence their knowledge and the perceived relevance of deceased donation. Similarly, the perception among South Asian and Nigerian participants that they could trust the process of donation and transplantation in the NHS appeared to reflect personal experiences and comparisons with their home country. For many Caribbean participants their lesser trust in the donation and other systems of UK society appeared to be related to their perception that they occupied a marginalised and disadvantaged position and were thus at risk of discrimination and disadvantage. Other common themes related to the influence of faith and cultural beliefs that acted as a positive force in relation to organ donation for some ethnic/faith groups, particularly those of Sikh and Hindu faiths, but as a constraint for other groups especially for many older people of Islamic faith.

It was not feasible given the focus group method and composition of the study group to identify precisely how aspects of individuals’ habitus and bounded rationality varied in relation to education, social class and age. However there was some evidence of their influence on knowledge and on individuals’ feeling of personal autonomy in decisions regarding donation rather than requiring to reflect faith or family traditions. Moreover, as minority ethnic groups become increasingly heterogeneous through for example increasing education and socio-economic differentiation and higher rates of intermarriage, the significance of the habitus associated with a particular ethnic origin is likely to decrease as other identities assume increasing significance. This reflects what Bourdieu (1977) described as the continuous process of transformation in relation to changes in the material and social environment and individual experiences, with dispositions that constitute the habitus therefore never being fixed.

We recognise there are questions of the status of participants’ accounts and their significance for practices. Bourdieu (1977: 19) referred to a distrust of ‘native accounts’ that put a mistaken reliance on rational decision-making as opposed to the underlying unconscious determinants of behaviour. While accepting this caution we argue that our focus groups largely elicited immediate affective responses, with individuals responding to an unfamiliar topic in an informal conversational setting. However differing affective responses may become dominant in other situations. For example, for some people the need to indicate a willingness to join the ODR when completing a form for another purpose may be responded to in terms of their initial positive views of the importance of saving a life although also having fears about donation and issues of faith beliefs. This raises ethical and libertarian issues regarding restricted choice context situations where strict presumed consent and mandated choice systems do not allow time for consideration or for any review and follow-up of the initial choice.

Conclusions

This analysis of the influences on minority ethnic groups’ knowledge and responses to deceased donation supports Bourdieu’s concept of habitus with its emphasis on the significance of the objective material and social environment for individuals’ acquired schemes of perception and appreciation and therefore for their choices and actions. It also explains how dispositions may vary both between and within these social groups associated with differences in history, geography and personal experience. In policy terms the variations in frameworks and circumstances of ‘nudgers’ and ‘nudgees’ may lead to a lack of consensus as to what is in individuals’ best interests and in their actions and choices, while those people who choice architects regard as most in need of nudging may often be less ‘nudgeable’.

This article focused on a particular Nudge strategy that involves a topic with considerable emotional overtones and a significant system change and is thus particularly susceptible to socio-cultural influences. Examples of strategies introduced to increase rates of deceased donation that were subsequently repealed due to lack of effectiveness or social protest include mandated choice systems introduced by several states in the USA that resulted in low registration rates (Whyte et al., 2012), and the introduction of presumed consent in Brazil that lacked the support and trust of the population (Csillag, 1998). This suggests that the design of effective Nudge strategies, particularly those that address sensitive issues, should be informed by detailed understanding of the ingrained perceptions and practices of those social groups who form key targets for behavioural change. This might initially involve a more pluralist approach through collective discussions and the involvement of citizens to design Nudge contexts (John et al., 2009), as well as the use of more targeted Nudge strategies. This might include use of mobile registration units to promote ease of access to registration among those groups in the population for whom time, rather than knowledge and perception, is their main constraint. The acceptability and effectiveness of nudges are thus influenced by both the nature of the nudge and who is nudged.