Healthcare choice: Bourdieu’s capital,habitus and field

Abstract

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French

The promotion of choice is a common theme in both policy discourses and commercial marketing claims about healthcare. However, within the multiple potential pathways of the healthcare ‘maze’, how do healthcare ‘consumers’ or patients understand and experience choice? What is meant by ‘choice’ in the policy context, and, importantly from a sociological perspective, how are such choices socially produced and structured? In this theoretical article, the authors consider the interplay of Bourdieu’s three key, interlinked concepts – capital, habitus and field – in the structuring of healthcare choice. These are offered as an alternative to rational choice theory, where ‘choice’ is regarded uncritically as a fundamental ‘good’ and able to provide a solution to the problems of the healthcare system. The authors argue that sociological analyses of healthcare choice must take greater account of the ‘field’ in which choices are made in order to better explain the structuring of choice.

Keywords

Bourdieu choice healthcare services inequality rational choice theory

Introduction: Current conceptions of healthcare choice

The endorsement of patient ‘choice’ has become a key goal of healthcare planning for many developed, and even developing, nations. Its popularity rose in opposition to the publicly planned, and delivered, health and welfare systems of the advanced economies of the postwar period: state systems based on the collectivist values of equity and community-defined needs, where a primary objective was to offer equal access according to need (Fotaki, 2010: 900). For the plethora of countries where there is now a mixture of private and public healthcare services, the promotion of patient choice has fundamentally centred around state and corporate strategies to increase usage of private health facilities: that is, assist patients to ‘make the choice to go private’. Such efforts have been increasingly successful worldwide, resulting in the widespread privatisation of healthcare services in Australia (Collyer et al., 2015) and elsewhere (e.g. Hassenteufel et al., 2010; Phua and Barraclough, 2011; Saltman, 2003).

The trend towards private healthcare is aligned with the philosophical origins of the notion of choice as found in economic liberalism – and the latter’s concern with property rights, individual autonomy and personal responsibility (Fotaki, 2010: 900). In its current form, the notion of choice is encapsulated within rational choice theory, where proponents argue that health consumers are ‘rational actors’, acting purposively to maximise individual outcomes.

Three basic assumptions about human behaviour underpin rational choice theory (Patrick and Erikson, 1993: 426–427). First, the theory regards people as independent of their social context and always acting with intention. Patients, reconfigured as ‘consumers’, are encouraged to ‘shop around’, to actively evaluate the services of health professionals and go elsewhere if the service is unsatisfactory (Lupton, 1997). As consumers, patients are encouraged to invest effort in acquiring information about price, quality of providers and other factors such as waiting times, and use this information to select between available alternatives (Victoor et al., 2014). Second, individuals are assumed to be stable and consistent in their choices even in the face of risk and uncertainty (Hechter and Kanazawa, 1997: 194; Levin and Milgrom, 2004). The third assumption is that individuals prefer more rather than less choice, ‘that the more choice, the better, and that the human ability to manage, and the human desire for, choice is unlimited’ (Iyengar and Lepper, 2000: 995).

Contesting dominant assumptions in rational choice theory

These three assumptions are contested by sociologists who regard choice as existing within a complex sphere of interrelationships, vulnerabilities and interdependencies. It is argued that patients cannot readily be equated with the ideal model of the consumer because it is difficult for individuals to make rational choices when they are at their most vulnerable (Palmer and Short, 2014: 44), but also because of a fundamental asymmetry in medical knowledge. In general, healthcare professionals hold more knowledge and experience than patients about medical matters, and the latter tend to rely on the former’s judgement, making the neoliberal assumption of the rational and informed healthcare consumer incongruous (Harley et al., 2011; Powers and Faden, 2006: 108). Such problems are compounded in situations where individuals are faced with selecting between expensive or hard-to-evaluate products such as health insurance, for they are likely to ‘lack the skill and time to make choices based on a careful assessment of the relative costs and quality of competing health plans, tending instead to choose on the basis of anecdotal information, such as their friends’ experiences’ (Frank and Zeckhauser, 2009: 1135). Moreover, evidence suggests patient choices are far from consistent, and influenced by how the choice is offered, how information is framed, and the context in which choices are made (Dixon et al., 2010). This means there is no such thing as the typical patient: different patients make different choices in different situations and the same patient makes different choices in different circumstances (Fotaki, 2006, 2014; Victoor et al., 2012).

There is also little evidence that increasing the level of choice will raise the quality of services, improve equity in the use of services or improve the efficiency of services (Fotaki, 2010). It cannot be assumed that rising healthcare costs are a product of unimpeded access to services, nor its corollary, that paying for services provides a necessary ‘price signal’ to ensure individuals will not ‘over-utilise’ services. On the contrary, sociological approaches to healthcare place the responsibility for rising healthcare costs elsewhere (e.g. the rise of for-profit medicine, see Collyer et al., 2015; Richardson and Segal, 2004; or private insurance systems, Shamsullah, 2011); regard healthcare services as a means to better health and the alleviation of debilitating conditions or illness and hence argue they should be provided liberally rather than restricted (Palmer and Short, 2014: 44); and consequently propose user-pays systems and co-payments to be unethical because they restrict access to services, particularly for the most vulnerable and poorest groups in the community.

Further, there is little evidence linking private, free-market medicine with better health outcomes. Indeed, while there are almost insurmountable methodological difficulties comparing public with private provision, particularly in the Australian case (Collyer, 1996), evidence suggests better health outcomes are found in public systems of care, where equity of access and universalism are more readily achieved (Davis et al., 2014; Pollock and Price, 2011; Whiteside, 2011). Moreover, there is evidence of a growth in the level of inequality in the healthcare systems of the world, indicating the increasingly uneven distribution of services and significant constraints on access to existing services for various social groups (Reibling and Wendt, 2012), including those in rural areas (Sandall et al., 2009). Such studies indicate that ‘choices’ about health need to take into account the socially constructed nature of decision-making (Pescosolido, 1992: 1096), and show that choice cannot be adequately investigated without, at the very least, taking into account the healthcare context: the cost and quality of available services, accessibility to those services, and the support provided to patients to make ‘healthy’, more informed, choices.

Sociological approaches to healthcare choice

Collyer’s (2012) mapping of the field of health sociology in Australia, Britain and America indicates that the concept of choice/decision-making was one of several major points of focus, employed in about 10% (86/842) of papers published between 1990 and 2011 (Collyer, 2012; see also Harley et al., 2012).¹ Additionally, relative to other topics, the papers on choice and/or decision-making rose from 8% in the period 1990–1999, to 12% of the papers in the period 2000–2011, suggesting a rising interest in the topic across the field. Harley et al. (2012) interrogated Collyer’s data further, finding that 43 (50%) of the papers on choice examined the patient experience of illness and patient decision-making. These papers variously address the ethics and morals of the difficult choices faced at the ‘end of life’ or at its beginning: abortion and the reproductive technologies figure prominently (e.g. Keleher, 1997; Magnusson and Ballis, 1999; Sikora and Lewins, 2007). Others explore choices about the use of mainstream versus complementary and alternative therapies (e.g. Raynor and Easthope, 2001; Tovey and Broom, 2008); screening and testing (e.g. Crompvoets, 2003; Lee and Sheon, 2008; Salant and Gehlert, 2008); and the adoption (or otherwise) of healthy eating practices (e.g. Mallyon et al., 2010; Pike and Colquhoun, 2009).

This analysis indicates that while choice has not been a neglected topic in the sociological literature on healthcare, there is still insufficient interrogation of the concept itself. For instance, few studies investigate the decision-making of doctors or other health workers, or indeed whether patient choices should be extended in the healthcare arena. There are a few exceptions, for instance Propper (2010) suggests that extensive choice is unnecessary, as patients may be happy with less choice as long as the service they receive is good enough, and are often content with their general practitioner’s (GP) recommendation. And it has been pointed out that having ‘unlimited options can also make people more dissatisfied with the choices they make: a point referred to by Schwartz (2000) as “the tyranny of choice” ’ (cited in Dixon et al., 2010: 14). Even more pertinently, there is little investigation about the way patients make choices, and of the social structuring of patient choices. As Boyle (2013: 21) suggests, ‘meaningful choice’ is not just about having the right information, but also the right support, confidence and the ability to take part in joint decision-making. Instead, the primary direction of current research has concerned the salience of consumer choice for the negotiation of identity in a modern ‘risk society’ (e.g. Eckermann, 2006; McDonald et al., 2007: 448; Warin et al., 2008), which carries an underlying message about the necessity and value of choice to the contemporary citizen. This approach relies heavily on the theorisation of risk by Beck (1992, 2009) and Giddens (1991), which fails to engage effectively with social structures such as class (e.g. Atkinson, 2007; Brannen and Nilsen, 2005; Goldthorpe and McKnight, 2006; Mythen, 2005; Simpson, 2012), and is therefore particularly unsuitable for conceptualising the structuring of healthcare choices.

The literature on choice, then, is clearly in need of both elaboration and theorisation. This is particularly the case given the way neoliberalist discourse encourages sociologists – as it does all individuals – to reject the very possibility of structural constraints on our individuality and the choices we make as modern subjects. It may well be the case that modern life in western societies is characterised by a compulsion to make choices, to demonstrate our capacity and competence in rational decision-making, and undertake our duty as modern citizens by choosing healthy options (Moore and Fraser, 2006: 3037). Nevertheless this context makes it even more imperative for the notion of ‘choice’ to be examined critically, and for sociologists to resist the pressures of neoliberalist discourses to shape the very sociological knowledge about choice itself.

Theorising choice is rendered difficult also by the fact that the analysis of the social shaping of decision-making perches perilously between two dominant paradigms of sociological theory: the structuralist approach, which tends to ignore or minimise the importance of human agency in the creation of structures; and the interactionist or individualist approach, which rejects or underestimates the determination of action by social structures. Engagement with either one of these traditions in isolation can produce only partial insights into the investigation of choice. If we take it as axiomatic that choices are structured and organised by conditions of the social context but that there is always some room for individual agency, then choice about health and healthcare becomes an exemplar for sociological theorising.

Max Weber’s work helps situate the theorising of choice between the structuralist and individualist paradigms of sociology. Weber’s mis-readings of Marx (Weber did not read the latter’s work) produced an alternative to a determinist, wholly structuralist approach to the analysis of the rise of capitalism (Weber, 1958). Weber (1978) later proposed that people’s choices about dress, marriage, eating, etc. contribute to the social reproduction of status distinctions (social inequalities), but that these choices are themselves constrained by both the material and non-material resources and rules of the community. These structural aspects are the life chances, which determine the probability of individuals achieving their goals, and thus shape individual choices (Abel and Frohlich, 2012: 237). This Weberian approach has been taken up in the recent sociological health literature to analyse the interrelations between health behaviours and their social shaping (e.g. Cockerham, 2005). Weber’s work is also arguably the basis of the Bourdieusian approach to health inequalities and behaviours (e.g. Abel and Frohlich, 2012; Fotaki, 2010; Shim, 2010). Bourdieu’s work extends Weber’s theoretical framework into an even more explicit concern with the structuring of agency and the agentic production and reproduction of structure.

Using Bourdieu to analyse healthcare choice

For Bourdieu, three interlinked concepts enable the analysis of the relations between agency and structure: habitus, capital and field.

Habitus is employed to bind the ‘objective’ with the ‘subjective’ social world. It explains how it is that people act and think in accordance with the social context without those ideas, beliefs and practices being fully determined by social structure. In the habitus people’s experiences become embodied, and through these experiences they develop a ‘feel for the game’, learning the rules that become second nature to them (Bourdieu, 1994: 63). Thus, in their daily lives, individuals act unconsciously according to their habitus and sometimes make choices and develop strategies as they engage with various social fields, gathering and deploying forms of capital.

Capital, the second of the concepts, is used by Bourdieu to refer to the kinds of resources actors bring to social interaction or else to the products of those interactions. These resources may be used consciously or unconsciously, and can take an economic, cultural or social form. The different forms of capital indicate Bourdieu’s borrowings from Weber, where the latter theorised the need to take into account the deployment of resources of a less directly economic kind, including social prestige and status. Economic capital is essentially about material resources such as income or property, and Bourdieu sees this as the basis of all other types of capital (Bourdieu, 1986: 252). Social capital in contrast refers to the resources linked to the ‘possession of a durable network of mutual acquaintance and recognition’ (Bourdieu, 1986: 248). Cultural capital concerns the cultural competencies individuals develop through socialisation and learn over time. Cultural capital can be incorporated as skills and knowledge, objectivised in books or tools, or institutionalised as degrees or certificates (Abel and Frohlich, 2012: 238). A crucial difference between Bourdieu’s concept of capital and that of the equally well-known James Coleman is that the former explicitly rejects the latter’s key presumption that ‘the actions of agents can be analysed and understood in terms of choices that maximise utility’ (Adkins, 2008: 1211). Indeed Bourdieu sought to offer an alternative to Coleman’s rational choice sociology, proposing that capital is not simply a characteristic of the individual but a class phenomenon, and that ‘choice’ is therefore socially, not individually produced.

Bourdieu’s third concept, the field, refers to a social space (such as an academic field or a healthcare field), but also a configuration or network of relations with a specific distribution of power. A field is always a site of struggle and contestation (Collyer, 2014), and is dominated by the logics of the economic field where the production and exchange of capital reproduces unequal class relations and its structures of inequality (Moore, 2008: 103–104). In Bourdieu’s words, the field is a space of position-takings, a ‘structured set of the manifestations of the social agents involved in the field … [it] is a field of forces, but it is also a field of struggles tending to transform or conserve this field of forces’ (Bourdieu, 1983: 30, emphasis in the original). The healthcare field, for example, can be understood as characterised by contests between the dominant ‘position-takings’ or claims of medicine (where health is defined as the absence of pathology), those of the corporations of capitalism (where health is defined as a product for market exchange and profit), the capitalist state (where the medical definition of health and the need to support capitalist medicine sit somewhat uncomfortably alongside political goals to mediate the effects of the inequalities of the capitalist market on the health of the population), and those of subordinate actors with a plethora of competing and diverse position-takings, for example, patient rights, public health or complementary and alternative medicine.

This triad of concepts – habitus, capital and field – can assist with theorising health choices, as long as Bourdieu’s concept of capital is not used in a descriptive and functional manner but understood in a dynamic sense and fundamentally as a class phenomenon. This means interpreting Bourdieu’s concept of capital not just as a passive resource within a predetermined field, but as a form of power or capacity to act, that is, as the ‘energy’ that drives the development of a field through time (Moore, 2008: 105). The emphasis, then, must be on this more dynamic definition of capital, on the way forms of capital can be transformed, under specific conditions, into other forms of capital, and thus gain social and financial advantage for the actors involved. After all, as Abel and Frohlich (2012: 238) argue from their reading of Bourdieu, the different forms of capital are dependent and conditional on one another. For instance, the acquisition of social capital necessitates cultural capital, as membership of a given social group requires specific communication styles or behavioural skills. Capital in various forms, particularly in the form of knowledge and skills, is thus implicated in human action, it is employed for all meaningful action, and ‘is a key component in people’s capacity for agency, including that for health’ (Abel and Frohlich, 2012: 238).

It is also important to note that it is not simply the acquisition of capital that confers individual or group advantage and produces a hierarchical, unequal society with marked health inequalities and differential capacity to choose: capital must be activated, employed and engaged with. Individuals do not simply consume or own resources, they must acquire and actively deploy health-relevant capital if their actions are to be health-promoting (Abel and Frohlich, 2012: 238). After all, nutritional knowledge is often ignored and abundant income may easily be spent on health compromising behaviours:

… inequality goes beyond just the unequal distribution of capital … there is considerable social inequality also in the chances and ability for people to have the different forms of capital consistently support and complement each other with the end result of their interaction being a health advantage. (Abel and Frohlich, 2012: 239)

Health choices can be understood in this way as the processes of agency in action. However, these choices must also be shown as socially structured. The structuring of health choices can be understood in Bourdieusian terms when the three concepts are brought together into an interlinked and dynamic schema. Health choices are structured within the habitus, which is both a ‘structured and structuring structure’ (Bourdieu, 1984: 171). This occurs through the interplay and interaction of the various forms of capital where individual practices are aligned with those of one’s social group or class. But the habitus and its dispositions are in turn structured by the dynamics of the field. The field gives the habitus structure (Bourdieu and Wacquant, 1992: 127), for it is the mechanism through which the various capitals are produced and socially distributed (Moore, 2008: 105). In this way the logics and forces of the field structure the capacities of actors, differentially enabling or suppressing the realisation of various forms of power, and giving shape to the kind of choices that can be made.

Studies of choice in healthcare

Studies of the choice to purchase private health insurance (PHI) can potentially illustrate the dynamics of habitus, field and capital. In the Australian context, PHI is an optional addition to the universal health insurance system of Medicare and provides individuals with some financial assistance to access services in the rapidly growing private healthcare sector (see Collyer et al., 2015). A series of policy incentives (most notably government subsidies) and penalties (e.g. taxation penalties) favourably position the choice to purchase PHI within the healthcare field. Harley et al.’s (2011) study of PHI marketing illustrates how companies draw on shared meanings and concerns to influence individuals to purchase their product, and use their positioning in the field to construct a particular form of consumption by individuals. Another study has focused on the value people place on having PHI, finding that it is valued even where it is not utilised in the Australian context (Natalier and Willis, 2008). (There is no requirement in Australia to use PHI, with all citizens retaining the right to be treated as public patients in public hospitals and covered by Medicare.) Moreover, these values can be transmitted from generation to generation within families, and have been found to impact on participants’ choices about the purchase of insurance. Participants who have grown up in families with PHI, even if they have low economic resources themselves, may value it sufficiently to put in place strategies to purchase it, indicating that while economic capital is important, other forms of capital need to be examined in order to explain people’s healthcare choices. This finding demonstrates the largely unconscious shaping of behaviour through the habitus. As one participant stated when discussing his reason for choosing PHI: ‘Everyone is still on it in my family. It’s just the way I’ve grown up’ (in Natalier and Willis, 2008).

Zadoroznyj’s (1999) study of choice in Australian maternity services is illustrative of the potential to explore the dynamic nature of field and capital. Yet, while she uses a Bourdieusian framework to link social class and health-related behaviour, further work is needed to illustrate how the field structures choices and the exchange of capital beyond the initial placement of individuals into social classes. Bourdieu’s symbolic world is evident in this study in the way the decision to purchase PHI for coverage for childbirth is linked not just with income but with social ideals of having the ‘best care’, reflective of the current framing of ‘both the idealisation and character of possible birthing services’ (Zadoroznyj, 1999: 268). While social class differences are evident in the women’s narratives, Zadoroznyj also found experiential knowledge, or up-skilling, serving to shift positionings in later birthing choices. Zadoroznyj gives the example of ‘Chris’, a participant of limited economic and cultural resources, who was dissatisfied with her first birth experience. Chris drew on her experiential knowledge to take greater control when birthing with her second baby, by delaying going to hospital when in labour; and once there by expressing her dissatisfaction. ‘They wouldn’t let me sit or be the way I wanted, so I just screamed. My husband was so embarrassed but I thought, “Well you’re going to get it” because they wouldn’t let me have my say’ (in Zadoroznyj, 1999: 281). What is evident from this study is the way experiential knowledge may shift the dynamics of some choices made about, and interactions with, healthcare providers. However, if these processes were analysed with greater reference to the structures of the field, it would become clear that there are severe constraints on the individual’s capacity to deploy capital in a manner which might change the structures of decision-making – that is, the material conditions under which childbirth choices are made.

Fully utilised, a Bourdieusian approach to understanding healthcare choices can bring together the key concepts, rather than focus on a single determinant, potentially providing a richer analytical account of health behaviours that extends beyond individual choices in the context of their capital resources (see e.g. Edwards and Imrie, 2003; Lunnay et al., 2011). Some such studies have brought a better understanding of the cultural underpinnings of choice-related behaviours, and the manner in which social inequalities in health are perpetuated (e.g. Abel and Frohlich, 2012; Cockerham, 2005; Veenstra, 2007). This is because Bourdieu’s approach interrogates the intersection of both material and symbolic factors which condition and structure the social context within which choices are made. However, even within studies that adopt a Bourdieusian approach, very few focus on the field itself as a mechanism to structure choice and its effects on the operation and functioning of capital.

Shim (2010) offers a rare example of a study that sheds light on the interactions between capital and field. In this, her focus is on cultural capital, specifically her concept of cultural health capital. Shim (2010: 12) draws on Bourdieu to demonstrate the way ‘social structural inequality manifests in clinical encounters’. Cultural health capital is accumulated in various practices concerning embodiment, cultivated consumption (or experience) and interactions with healthcare providers so that ‘patients can continually develop the cultural resources to manage and navigate healthcare’ (Shim, 2010: 8). The value of Shim’s analysis is in pointing to the co-construction of choice through interaction between patient and healthcare provider (and extending it beyond patient stereotyping by providers); and then at another level, recognising how such interactions may be constrained by broader interactions in the field. For example, payment systems aligned with consultation time reinforce and reward particular communication capacities and styles that privilege those with some health knowledge or other social advantages. Shim also points to the differential exchange value of cultural health capital which may vary according to social grouping and situation.

The road ahead: Navigating the healthcare maze

This brief foray into the notion of choice has suggested a need for a greater focus on the field of healthcare, its institutions and organisations, its payment systems, gaps in services and barriers to access; but also the way patient choices within the system are shaped by the decisions and practices of its ‘gatekeepers’: the healthcare providers, managers, administrators, policy-makers and significant others in the institutions and organisations of both private and public healthcare. Such a focus would entail paying much greater attention to the producers of healthcare, as Bourdieu himself did in investigating the cultural production of art (Bourdieu, 1996). There is an even greater imperative for this in the healthcare field, because patient ‘choices’ coincide, in the majority of cases, with the decisions made for them by their healthcare practitioner, and are, in all cases, constrained by the medical definition of ‘the problem’ and its ‘solution’, and by the availability and accessibility of specific treatment options and services. The latter, which we refer to as the ‘healthcare maze’, has been constituted historically through political and corporate action, through the struggles of professionalisation and specialisation, and reflects the ideas and practices of the institutions of medicine within a context of both state and corporate activity.

The healthcare ‘field’, like all fields as conceived by Bourdieu, is clearly a ‘universe of belief’. It is an arena of action where cultural products are fought for and valued and given value (Bourdieu, 1996: 229). Yet Bourdieu’s fields are not just universes of belief, they are arenas of practices where power operates. They are ‘structuring structures’, and an aspect of Bourdieu’s theoretical framework that has been least investigated in the sociology of health literature. Yet patient ‘choices’ between, for example, treatment with surgery, chemotherapy, radiation therapy or even traditional medicine therapies, are shaped not just by the cost of each option or the availability of each service in their local area (though each of these can be very important), but through the ongoing competitive practices between the differing specialities of medicine. Each speciality seeks to define the ‘problem’ and its appropriate ‘solution’, and positions itself in the hierarchically organised field with its claims for legitimate medical knowledge and is supported – or not – by its relative proximity to the poles of economic and cultural power. These are the processes through which choice is structured, and they are a fertile field for future sociological analysis.

Footnotes

Acknowledgements

The authors acknowledge the support of the School of Social and Political Sciences and the Faculty of Health Sciences at the University of Sydney.

Funding

This work was supported by an Australian Research Council Discovery Grant (DP130103876) ‘How Australians navigate the healthcare maze: The differential capacity to choose’.

Notes

Author biographies

Fran Collyer is Associate Professor and sociologist at the University of Sydney in the Department of Sociology and Social Policy. She is senior editorial advisor to Health Sociology Review, and series editor for Anthem Books. Her research interests include the privatization of healthcare services, the sociology of the healthcare system, the history of sociology, disciplines and institutions, and the sociology of knowledge. Current funded research projects focus on the experience of patients within Australia’s mixed private and public healthcare system, and the formation and inequalities of global networks of expert knowledge. Recent books include Mapping the Sociology of Health and Medicine (2012), for which she won the Stephen Crook Memorial Award for the best Australian monograph 2014, and the Palgrave Handbook of Social Theory in Health, Illness and Medicine (2015).

Karen Willis is a health sociologist and qualitative researcher. Professor Willis is currently lead chief investigator on the Australian Research Council Project, Navigating the HealthCare Maze – The Differential Capacity to Choose; and has just commenced a further study examining goal setting for people with chronic health conditions. Her work aims to bring together the field of individual decision-making with broader social and policy forces. In pursuing this research interest she has examined the choice to participate in mammography screening, the reasons people take out private health insurance, and the actions fishers and farmers take to maintain good health. She is also Associate Dean, Learning and Teaching in the Faculty of Health Sciences at Australian Catholic University.

Marika Franklin, BA Psychology, is a researcher on the Australian Research Council funded project exploring healthcare choice in Australia at the University of Sydney. She is also a PhD candidate at the Australian Catholic University and is researching how self-management goals are negotiated and enacted between people with chronic conditions and their healthcare providers. Her experience is in evaluation and psychosocial research in social and health domains. Marika also has an interest in the psychosocial needs of siblings of cancer patients and how the needs of siblings can be addressed in current models of service delivery.

Kirsten Harley is an honorary lecturer in the Faculty of Health Sciences at the University of Sydney. She is part of a team researching healthcare choice in the Australian context, a project with particular personal significance since her diagnosis with motor neurone disease in early 2013. Her recent publications include (with Gary Wickham) Australian Sociology: Fragility, Rivalry, Survival (Palgrave Pivot, 2014) and (with Kristin Natalier) a special issue of the Journal of Sociology, Teaching Sociology: Reflections on the Discipline (2013). She received the University of Sydney’s inaugural Rita and John Cornforth Medal for PhD Achievement in 2011.

Stephanie Short is Professor and head of the Discipline of Behavioural and Social Sciences in Health in the Faculty of Health Sciences at the University of Sydney. Professor Short’s research interests concern health governance and public policy, both locally and internationally. She has published widely in health sociology and policy, including the 5th edition of Health Care and Public Policy: An Australian Analysis, as co-author (Palgrave Macmillan, 2014) and Health Workforce Governance, as co-editor (Ashgate, 2012).

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