Abstract
In this article, we focus on developing a critical sociology of ‘cultural and linguistic diversity’ as evident in cancer care praxis, drawing on the perspectives of cancer care health professionals. Set within the context of increasing efforts on the part of healthcare providers to ‘accommodate difference’ and ‘incorporate diversity’, we aimed to utilise participants’ accounts of practice to ask: how do we and how should we think about and operationalise ‘culture’ (if at all) in cancer care settings. Drawing on eight focus groups with doctors, nurses, allied health staff and multicultural community workers, here we explore their accounts of: othering and over-simplification; the role of absences in biographical reciprocity; intimacy, care and carelessness; and entanglements of culture with other aspects of the person. Based on their accounts, we argue for a broadening of the examination of the nexus of culture and care, to focus on the problematics of othering, intimacy, reciprocity and complexity.
Introduction
Inclusion of ‘diversity’ has become a key concept in healthcare provision; a normative if not essential part of corporate and/or public institutional demonstration of commitment within contemporary organisational (and public) discourse (Lees, 2003; Vertovec, 2012). And, within healthcare, a focus on diversity in relation to culture – commonly termed cultural and linguistic diversity or ethnocultural diversity – has become prominent, particularly as related to health service provision and delivery, access to services, and health outcomes. In the context of cancer care, there is an extensive literature on delivering care to culturally and linguistically diverse patients (e.g. Harun et al., 2013). Professional training and education, for example, commonly promote cultural competence, and supportive care practices have been developed to accommodate diverse cultural needs (e.g. Brown et al., 2016). These have tended to focus on the vulnerabilities of difference, or alternatively, the benefits of better understanding difference for treatment optimisation (e.g. Bedi and Devins, 2016; see also O’Callaghan et al., 2016). More recently, a lexicon of collaboration, partnership and relationship building has come to the fore within strategic operation and planning for healthcare and policy in the Australian context (e.g. NSW Health, 2012) and across many other national service contexts (e.g. West et al., 2015). Yet, as interventions emerge, and providers seek to embed ‘diversity’ in their manifestos and everyday practices, many questions persist and the field, we posit, struggles to adequately conceptualise and manage culture in therapeutic relations.
The ways by which ‘diversity’ is understood, deployed and promoted both organisationally and within the cultural imaginary are multivalent and ambiguous (Ahmed, 2007; Vertovec, 2012), raising important questions around the diversity agenda (cf. Anthias, 2013b). As Vertovec (2012: 54) notes, ‘what [and who] is diversity – that loose set of discourses, policies and practices – actually for?’ (see also Ahmed (2007); Bell and Hartmann (2007)). ‘Culture’ is also neither a fixed nor a benign or neutral concept; rather, it is fluid and ever-changing, imbued with political, ethical, legislative and power relations (Dorazio-Migliore et al., 2005; Isar, 2006). Thus, in turn, questions around culture include: what constitutes cultural ‘difference’ and from whose perspective? Who gets to decide what is ‘done’ as a result of established difference and to what end? (cf. Anthias, 2013b; Vertovec, 2012). Such questions bring up broader issues including where culture begins and ends, and where and how it should be located vis-à-vis other aspects of the person (e.g. gender, class, history of trauma and age) (Anthias, 2013a). Moreover, such questions speak to critiques of diversity as a concept or agenda, particularly through its additive framing (Anthias, 2013b), where the adding on of difference to whiteness or Anglo culture reinforces Anglo normativity, from which others are distinct or divergent. Moreover, a framing of diversity as different or other than the normative White person also serves to legitimise the non-integration of White into the multicultural milieu, that is, the notion that ‘culture’ or ‘culturally diverse’ comprises only those other than the White norm (cf. Aelbrecht et al., 2016; Vertovec, 2012).
These questions hardly scratch the surface of the considerable dilemmas that are raised at the intersections of culture and care (Chattoo and Ahmad, 2004; Good and Hannah, 2015). What is increasingly clear is that the bracketing of ‘culture’ is an inadequate solution to the sheer complexity of personhood in care settings (Thorne et al., 2005). And, moreover, that working with culture necessarily requires one to work with dynamics of: difference, otherness, exclusion, reciprocity, obligation and recognition (Dervin, 2012). Such dynamics, we will posit here, are not captured in the ‘treatment’ of culture in isolation, or at the level of the individual patient (Good and Hannah, 2015). As emphasised by intersectional scholars, the danger of a focus on individual difference lies in the problem of which differences matter. Moreover, when, where and how the dynamics of power, social structure and political economy may be sidelined by the individualisation of differences (Anthias, 2013a: 6). It is this individualisation-related concern that pre-occupies our analysis here; and it drives our intention to evade reductionism, but acknowledge concerns at the coalface of care (including the specificities of cancer and the complexities of a diagnosis with terminal illness). Thus, drawing on focus group discussions with professionals working with ‘culturally and linguistically diverse cancer patients 1 ’, we seek to critically explore their narratives of the intersections of culture and care, including the normative and contested talk, with a focus on the relationality of biographies.
Background
Some foregrounding of the current environment within health services is useful as a platform for unpacking the conceptual considerations therein. While the focus here is on Australia, the situation is broadly consistent with approaches to cultural and linguistic diversity in many other comparable Organisation for Economic Co-operation and Development (OECD) countries. At an empirical level, there is a plenitude of evidence, for example, that ‘cultural competence’ is important for ameliorating healthcare inequalities (e.g. Betancourt et al., 2003) and that survival rates are persistently lower for those who are deemed ‘culturally’ different (from the Anglo-majority/norm in Australia) (e.g. Butow et al., 2013c). Similar evidence exists across OECD countries (e.g. Kagawa-Singer et al., 2010). It has also been shown that quality of life (e.g. Sze et al., 2015) and quality of end-of-life care (e.g. Evans et al., 2012) are lower among migrant rather than non-migrant cancer populations (again, vis-à-vis the ‘norm’). This has driven the agenda in the oncological milieu to ‘intervene’, often, with a focus on: invoking cultural typologies (e.g. Bedi and Devins, 2016; Betancourt et al., 2003); promoting understanding of treatment; faster access to and concordance with care plans (e.g. Nonzee et al., 2015); improving communication and understanding of expert knowledge (e.g. Watts et al., 2017); and other difference-focused approaches (e.g. Phillipson et al., 2012; Yeo et al., 2005). Many of these approaches are dominated by a focus on fostering access to treatment, care and information, with an overarching emphasis placed on reducing disparities between the ‘diverse’ and the ‘norm’ (Good and Hannah, 2015). Such approaches have largely (implicitly or explicitly) involved the individualisation of difference, often concealing a series of complexities including: power in defining difference; the absence of acknowledgement of provider biography; implicit othering; and, the costs of deficit models of culture (Kokanović et al., 2008; Kokanović et al., 2010b; Yeo et al., 2005). This requires a re-consideration of how to think about culture in ways that resist such dynamics.
While the subtleties of ethnocultural diversity in Australia cannot be covered in any detail here (see Colic-Peisker and Farquharson (2011) and Levey (2012) for recent discussions), it is worth offering some context to the accounts presented below. As Australia has become increasingly diverse, through global migration flows and diversification of migration options over the course of the second half of the 20th century, the make-up of Australian society has shifted radically. As a result, at the level of categorisation, the backgrounds and biographies of people receiving care for cancer are vastly different from even two or three decades ago (some would interpret this as more ‘diverse’). Research in Australia and internationally shows that clinicians report several concerns when working with those from culturally and linguistically diverse communities: that this work is more complex to manage (Kokanović et al., 2010a; Priebe et al., 2011); that communication issues are more frequent (both in terms of language and emotion) (Aelbrecht et al., 2017; Priebe et al., 2011); and that treatment concordance can be ‘complicated’ by cultural differences (Aelbrecht et al., 2016; Priebe et al., 2011). Put this alongside the fact that migrant communities, at an epidemiological level, have poorer treatment outcomes and report worse experiences of cancer care compared to the broader population (e.g. Butow et al., 2013a; Luckett et al., 2011), and it is evident how the case for culture-as-problem has emerged. That is, how cultural diversity (as different or divergent from an Anglo norm) becomes associated with problems with and problems for patients with diverse backgrounds and biographies.
Despite the considerable work in this area (e.g. Butow et al., 2013b, 2013c), oncology providers continue to struggle to include cultural biographies without inadvertently othering migrant populations, positioning other cultures in opposition to one’s own; often slipping into a focus on particular cultural groupings, culture-in-isolation, or quality-of-life measures (Yeo et al., 2005). As a result, the agenda to integrate cultural diversity has lacked complexity, largely due to limited understanding of how cultural difference eludes neat capture (Erwin et al., 2010; Manalansan, 2006) and how they interplay with other aspects of personhood.
One of our ambitions here is to provide linkages between the literature on intersectionality and cancer care for culturally diverse communities. While culture is often ‘treated’ in isolation, our focus on intersectionality is used as a corrective to essentialising identity constructs that homogenise social categories; as a concurrent analysis of multiple, intersecting sources of subordination/oppression (Anthias, 2013a: 4). Moreover, we draw on intersectionality as a means of paying attention to inequality-creating social structures (i.e. of power relations), symbolic representations and identity constructions, and how they are inextricably linked to social praxis (see Anthias, 2013a, 2013b). Intersectionality thus is used to illustrate contestations within the accounts presented, as well as normative constructs therein. We argue it provides a useful platform for understanding cultural biographies in cancer care settings; but in turn, how particular constructions (e.g. migrant, culture, race, difference, foreignness and not Australian) may be treated as given (rather than constructed in social practice) – and are in fact differences that make a difference. As Anthias (2013a) outlines, intersectional approaches are a response to the failure to consider the construction of social categories as the exercise of power (by the state, economic interests, etc.). In this way, intersectionality should apply to all subjects (in this case, patient and professional) and, for example, be utilised to examine what is not ‘other’ in particular contexts (in this case, Anglo, Australian, English speaking and so on).
Two dynamics that have been important in the problematic of cultural and linguistic diversity in cancer care are those of grouping and distancing. In the first instance, this relates to the creation of configurations of what particular cultural groups require (in cancer care). Grouping often entails processes of over-simplification (i.e. assumptions of cultural homogeneity throughout a given country, ethnic group, etc.) but also othering (i.e. viewing other individuals or groups as inherently different to oneself), and necessarily belonging (i.e. denoting where one belongs – whether ‘here’ or ‘elsewhere’) (Anthias, 2013a: 6). Grouping, as we present below, involves distancing. In cancer care contexts, such distancing may be subtle, for example, most readily revealed in the idea of a lack of intimacy or carelessness in interactions with patients with culturally and linguistically diverse backgrounds and biographies. In more extreme circumstances, distancing has been examined in terms of the affect of (dis)taste (see Anthias (2013a: 6), drawing on Bourdieu), which again relates to processes of inferiorisation and (often implicit) othering. It is worth considering how such dynamics and respective practices may manifest (or not) in different oncology encounters.
Our analysis of culture and its challenges and opportunities, as presented below, is one dynamic in broader problems within medicine, and oncology as a sub-field, most pertinently the ambition to achieve person-centredness but the inadequacy of understandings of complex personhood (Dubbin et al., 2013; Epstein et al., 2005; Epstein and Street, 2011). Culture, and how it is approached, accommodated or included within healthcare practice and policy, remains one (albeit important) facet of this problem. Through the accounts of clinicians, here we seek to explore the constraints on person-centredness in terms of: what is valued, allowed or has presence in service settings; including various normative dispositions and self-reported styles on the part of health professionals (i.e. perceived as ‘acultural’ or otherwise). This includes consideration of how the dynamics of recognition of complexity offer potential instability and possibility for all stakeholders (and for clinicians, in particular).
Methods
Data collection and sample
The eight focus groups were run at three hospital settings in two different states in Australia; three in Queensland and five in New South Wales. After we obtained ethical approval (HREC/16/QRBW/296), an invitation was sent via email to relevant stakeholders (working in cancer or palliative care) across three hospitals. Emails were also sent to multicultural community workers within one local health district, and key representatives from several non-government organisations were working within the field. These groups included: (FG1) Multicultural Community/Allied Health Workers; (FG2) Allied Health Workers; (FG3) Medical Staff; (FG4) Nursing and Social Work Hospital Staff; (FG5) Multicultural Community Workers; (FG6) Allied Health Workers; (FG7) Medical Staff; and (FG8) Nursing Staff. In total, 57 individuals were available and provided informed consent in writing to participate in eight focus groups throughout 2017, with 4–12 participants in each group. The focus groups were conducted by EK and AB and lasted between 45 and 135 minutes, and were audio recorded and fully transcribed. There were 47 female and 10 male participants; 31 participants were born outside Australia, of which 14 identified as migrants. Medical staff included representation from medical oncology, radiation oncology, haematology, general medicine, emergency medicine and palliative care. Allied health staff included representation from social work, pharmacy, psychology, physiotherapy, dietetics, radiation therapy and speech pathology. Multicultural community workers included case managers, programme managers, community development workers, multicultural health workers, counsellors, pastoral care workers, and primary care and prevention project officers. Discussions, using a topic guide, were organised around the following domains: the perceived influence of the experience of migration on the dynamics of illness and care, including the differences between health systems and approaches to health, illness and care; the perceived core challenges faced within and across culturally diverse communities, the interactions between, and the characteristics of, formal and informal care sectors, and the presence and interaction of medical versus community/lay knowledges in cancer care contexts.
Analysis
The methodology for this project draws on the interpretive traditions within qualitative research. This involved taking an in-depth exploratory approach to data collection, aimed at documenting the subjective and complex experiences of the participants. The aim was to achieve a detailed understanding of the varying positions adhered to, and to locate these within a spectrum of broader underlying beliefs and/or agendas. Data analysis was based on four questions adapted from Charmaz’s (1990) approach which is informed by grounded theory: What is the basis of a particular experience, action, belief, relationship or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief and so forth a part? What are the implications of such actions/beliefs for particular actors/institutional forms? The approach used was developmental, in that knowledge generated in the early focus groups was subject to constant iterative analysis and discussion among three members of the research team, and challenged, compared with and built on by later groups. This approach provided an opportunity to establish initial themes and then search for deviant or negative cases, complicating our observations and retaining the complexity of the data. We approached the analysis by conducting an initial thematic analysis, conducted independently by AB and EK, who coded the data, wrote notes and then discussed ideas within the broader research team. Data analysis took place concurrently with the qualitative fieldwork over a period of months, with an initial analysis completed after each group to identify themes within the groups. Once all groups were completed, AB and EK again reviewed the transcripts to identify and confirm themes that ran across the different groups. Within this process, we continually sought to retain the richness of the respondents’ experiences, documenting atypical cases, conflicts and contradictions within the data (Ezzy, 2002). Once we had identified a theme, we would search through the transcripts for other related comments, employing constant comparison to develop or complicate these themes further. This process helped ensure that events initially viewed as unrelated could be grouped together as their interconnectedness became apparent. The final step involved revisiting the literature and seeking out conceptual tools that could be employed to make sense of the patterns that had emerged from the data (Ezzy, 2002).
Findings
Othering, and retaining complexity
The focus groups often began within a broad discussion of what constitutes cultural difference, the value of terminology such as ‘migrant’, ‘diversity’ and other categorical distinctions in the contexts within which they work. We wanted to explore the ontologies of the participants’ milieu (however varied and contested), the ways in which words and categories were viewed as useful (or otherwise) and if they were observed to have normative effects. What emerged were tensions across and within the groups around categorising, what this meant for the multiple dimensions of the person and recognition of the difficulties of resolving such tensions in practice. There were several discussions around problematic terminology and even the idea of ‘culture’, and how categories distorted the complexity of the person:
On one hand, it [the term migrant] 2 is useful. On the other, you need to, to look that you can’t just take one category because each one of us belongs to many categories and it is hard, really, to say that this is the category that we’re going to follow because within religion there may be other issues … um … how can I say … cultural issues, socio-economic issues, education, and, as I said before, acculturation is huge, has huge impact in the way that people perceive their illness or sickness, whatever we call it.
[later]
I just feel that with the word ‘culture’ we have put everything in, the education, the religion.
It’s important not to generalise and put certain groups or certain problem in particular group … I think how well we listen to anybody’s issues of concern and listen to why they are a concern for that person, in their family context is really, really important. So, it sort of echoes a little bit what other people [in this group] are saying about how you define, how you put [people] into categories … some family members go, ‘Actually, I know that’s a category. I don’t like that category. I’m in that culture and I don’t like that category’ (Focus Group 3, Multicultural Community Workers).
The above interaction illustrates a wide range of dynamics, including the complexity of (categorical) belonging, the othering of naming and the desire for a focus on personhood and complexity rather than culture. Indeed, across the focus groups, we heard frequent attempts to resolve the challenges inherent to categorising or separating the inseparable when it comes to ‘culture’:
I was just trying to figure out the difference between family dynamics and cultural differences because – yeah. A lot of the times the family dynamics are different between different cultures and, I guess, that’s kind of what we’re seeing. It is to understand and figure out what the family dynamics are and how culture is involved in that. (Focus Group 2, Doctors).
The categorisation of cultural groups, difference, migrant status or country of origin was articulated within one of the groups as a form of subtle racism or bigotry, in that patients can be reduced to particular groupings and in the evasion of individual differences. This was seen to compound the problematic of systematic othering of the cultural diverse minority:
… I think there’s also a subtle racism in not accounting for diversity amongst and within the other culture’s group. I think sometimes we can say, ‘Well, this is how Thai people present’, and not asking more questions than that … I think there’s sometimes that soft bigotry by not accounting for the diversity and the individual differences.
I think that is so spot-on. I couldn’t agree more with that because we all assume that a person from a country is a certain type. People presume that all white people living in Australia are a certain type of person. We are very different and we’re all very individual.
Because [culture] it’s part of the mix … it’s not a dichotomy. It’s just part of the complexity, and if the cultural aspect of that person is more predominant, then that’s going to be more of that complexity for that person. If there are other things that come into the mix and if you’ve got low SES, isolation, depression, and all that sort of thing, then you’re taking that all into account. So, I don’t know that it’s an either/or kind of thing … (Focus Group 6, Allied Health).
As shown above, and throughout the focus groups, we heard of attempts to avoid the unconscious prejudice that was associated with assuming particular values, virtues, traits or behaviours of individual patients according to categorisation of cultural groups. While the participants above articulated various forms of grouping as akin to ‘soft’ racism or bigotry, there was broad consensus across the groups that taking difference into account was central to good practice. That is, it was a practice of making differences around culture that made a difference to care and illness experience for each individual patient. The emphasis, at least in some of the groups, was placed on the importance of naming as securing a particular ontology within the clinic and the (potential) entrapment of ‘culturally diverse patients’ in regimes of difference. The solution was to try to apply the same principles to all patients, regardless of race, skin colour, ethnic background, linguistic capacity and so on. Critically, the dominating critique was for the need for diversity within (constructed groupings) and multiplicity (in personhood).
Biographical reciprocity and relationality, or how to engage with ‘culture’
Another significant theme within the groups – and one crucial to our analysis here – was that of the relationality of biographies (lay and professional) in therapeutic settings, moreover the tendency to ‘treat’ the clinician’s biography as largely absent or irrelevant, and the patient’s biography as either ‘different’ or ‘same’ (relative to the absent/irrelevant clinical biography, or from the ‘norm’). This was often picked up on in the groups, either in relation to the lack of recognition of biographical relationality or in terms of ‘culturally diverse’ clinicians not acknowledging their own (perceived) otherness (reflecting the very intersection of authority, otherness and diversity, and how it is embedded in other aspects of the person – in this case status as a doctor or health professional). One of the doctors commented,
I’ve been caught out as a junior doctor of not saying I had a [cultural] background and then halfway through I realised they were struggling so I piped up, and they’re like, ‘Why on earth didn’t you say anything right from the start?’ ~ laughs ~ It was sort of a real betrayal that I hadn’t identified myself as somebody who would be able to speak to them in [that particular language]. So now I’m upfront … [otherwise] they feel like I’ve betrayed them … or that I’m ashamed of it somehow or avoiding it … (Focus Group 2, Doctors)
Reflecting on the (cultural) position of health workers, one participant commented,
I think we are shaped by where we’ve come from, our experiences to date. So to ignore that, I think, just wipes out a significant part of who you are. I mean … the information that you can get by actually going through understanding where people come from and then having access to cultural training to say, ‘Okay. Yes, that’s different from me, and that’s okay … If we take that out, I think that would be terrible’. (Focus Group 1, Allied Health Workers & Nurses)
The multicultural community workers also reflected on the recognition of biography, again linking experiences of practice to training:
I don’t think they [doctors] are conscious of that [culture]. They are not conscious of that unless they come from the same background as the patient. Otherwise, they assume that this [biomedical treatment and expertise] is the right thing and culture has nothing to do with it.
Maybe it depends on whether or not they were trained. So, if they were training …
Yeah … Some professionals are conscious when they deliver, but maybe the majority no … But they don’t [ask] question[s].(Focus Group 3, Multicultural Community Workers)
However, there was a sense of the pragmatism of avoiding any reference to culture (despite, as shown below, therapeutic engagement carrying cultural ‘baggage’ regardless). This non-engagement reflected attempts to treat ‘everyone the same’ or ‘everyone as people’ as synonymous with cultural sensitivity. This subsuming of the complexity of biographies within the logic of egalitarianism (cf. McLeay, 1997) – an important cultural tendency in the Australian milieu more broadly – was common within the focus group discussions, where (often multiple) marginalities were difficult to articulate (i.e. the extent to which a marginal position was linked to ‘culture’, or other (seemingly distinct) factors):
I just try not to make it an issue as a doctor. Honestly, all I try and do is see my patient as my patient, and I know you have to be culturally sensitive, but, at the end of the day, they’re all people and that’s, I think, what makes it easy. It’s about family and health and trust and respect. I try not to make a big deal of it.
I just stop it [thinking about culture], push it to the side, and move on with what I’m here to do, which is to treat you as a human being with your sickness.
Yeah.
That’s what it boils down to. I don’t care if you’re green, yellow, blue, black, or whatever. You’re a person and you’re my patient. (Focus Group 2, Doctors)
This ‘treating everyone the same’ logic – above used as a mechanism for articulating the complexity of culture – revealed the difficulties for (some) participants in making sense of (multiple) marginalities. As shown above, this ‘colourblind’, race-neutral rhetoric, however, highlighted attempts at egalitarian treatment, but concurrently revealed a lack of engagement with difference and associated forms of privilege and inequality. The association between engaging with culture and engaging with the person was also evident across the focus groups, where the difficulties in bracketing or labelling particular patients or experiences as according to ‘culture’ began to emerge:
Understanding where the patient’s coming from, understanding their past experiences, asking what they know about it and, before us making any assumptions, truly understanding where they’re coming from and then tailoring the information. And I think that’s true for any patient that you see. (Focus Group 1, Allied Health Workers & Nurses)
The emphasis above, describing an understanding of good person-centred care ‘for any patient that you see’ dominated discussions. That is, many of the discussions began with a focus on relationality and reciprocity – ensuring that care and treatment entailed productive relations between patient and health professional. As the above excerpts show, although, such accounts of practice were often qualified by the view that such attention on relationality (and reflection on one’s own biography or ‘cultural position’) was critical for good practice with all patients. Thus, while the ‘problems’ or issues faced by health professionals in ensuring culturally sensitive cancer care were clearly distinguished, there was a concurrent reluctance to reduce practice to reductive cultural categories, as we discuss more below.
Language, culture and emotions: intimacy and caring (careless) conversations
The groups often focused on the knowledge or information that may be missed with culturally and linguistically diverse patients. We wanted to extend this to an understanding of the relationality of difference (perceived, constructed or enforced). While we were interested in unpacking understandings around difference and otherness, we were also interested in accounts of what such differences do. Clearly, some differences are more concrete than others (e.g. language), although this also risks reifying particular features of the person. The challenges of language and the dynamics therein were probably the most problematic aspects of managing ‘cultural diversity’ (from the participants’ perspectives). What emerged was a series of reflections on intimacy and interaction, and how linguistic discordance was in many respects matched by stratification in levels of intimacy and therapeutic connectedness, providing an interesting intersection of culture and care:
They [non-English speakers] miss out on spontaneous conversation, ‘How are you going? Did you have a good night’s sleep?’ You can’t do any of that spontaneous, ‘Are you worried about anything?’ It has to be planned what questions are you going to ask [for when an interpreter is present]. It just makes it so artificial and less spontaneous, which is the biggest thing for me.
Yeah.
Yeah. That’s the other concern we have is that a lot of the time we miss symptoms. So the things that are not as visible or not as easily detected, we miss them because it’s something that anyone else who often speaks English or speaks the same language that the nurses are speaking will be able to voice, ‘This has been happening’, or, ‘That’s been happening’. It might not be something they’ve given the doctor in the doctor history because they didn’t think about it at that time. So it’s now a weekend and they’re thinking, ‘I should probably mention this’, and have no way to mention it. (Focus Group 4, Allied Health Workers & Nurses)
In another focus group discussion,
[As a nurse] what you’re doing is constantly assessing and shifting your communication and picking up what the issues are usually from the sensitive nature of what you’re doing with people. So 2am chats or when you’ve got someone in the shower and things like that you get that trust bond. So you’re missing that with people that you don’t have that ongoing communication with. (Focus Group 7, Nurses)
As shown above, language, but also culture, was viewed as considerably shaping intimate relations on the ward, with culture viewed as a barrier to intimacy in care. Language and suitable high-level interpreter services were often the focus, but this concern extended well beyond linguistic needs, to the broader ‘diverse’ population.
… I think we’re not very well-educated about how to use interpreters … The concept of, I’m just going to have these words come out and they’re just going to get literally translated and then literally translated back … Yeah [the only training we get is] ‘Watch this video’. But if there’s something mysterious about it, as a doctor-patient or a clinician-patient relationship it’s not about what we need to do mechanically, we need to cut the cancer out or we need to do this or that. What’s the difference between a doctor that everybody loves and a doctor that the patients don’t particularly like who’ve got the same technical skills? It’s that hour or the three hours where [doctor] the person comes across somehow so I can go home and think, ‘Well I don’t really understand all that, but he seemed like a good guy’. (Focus Group 8, Doctors)
The association between culture, emotion and relation was clear, with pronounced yet not well-understood consequences for treatment and care. The absence of knowledge and information, or the lacking therapeutic connectedness and intimacy, revealed not only some of the challenges ‘culture’ presents at the bedside but also how culture and biography are inextricably linked. That is, the ways by which each person (be it patient or clinician) brings their own unique set of demographics, experiences and dispositions to any encounter or relationship. While it was clear within the focus groups that an emphasis on the person was optimal, less clear were the ways in which this could be achieved within ‘Anglo’ cultures of care and what was articulated as ‘Western’ medical epistemologies. That is, how personhood and person-centredness operate at the intersection of culture, biography and care.
Biographies and (‘Anglo’) cultures of care: cultural narratives of choice/autonomy
The focus group interactions, on one level, were at times paradoxical. The aforementioned critique of categorisations of migrants or reduction to culture, seemed to contradict an explicit critique of the Western character of therapeutic engagement. We seek to unpack this (seeming) contradiction here. However, it is the manifestation of a response to the production of difference – that is, to note the characteristics and flaws in sameness (i.e. the logics of the centre, the situatedness of the norm and the culture in the cultureless). The binaries were often present in the talk within the groups with narrations of ‘Aussie culture’, ‘Western ideas’ and the problematising of various normative ideas therein, including those of choice, autonomy and disclosure. We approach these not as literal aspects of ‘Anglo’ therapeutic culture, but rather, as part of the making of difference and sameness within the groups; but also, as a way into thinking about acknowledgement of the biography (and potency therein) of the practitioner. Culture was often constructed as a problem for the clinician (despite so often being presented to the contrary – as about the care received by the patient). The rhetoric of the Anglo-problem can thus be seen as push back against the context of (at times) reductionistic cultural ontology, with various facets often utilised as evidence of the culture of Western biomedicine:
I think the Western medicine concept of patient autonomy and open disclosure, we still kind of try and stick to that. So, like we say, if a patient asks me a direct question about their condition, I’m not going to lie to them … but we’ll maybe, like you said, finesse the language … Whereas with Aussie culture, it’s everyone should know everything and it should be open. (Focus Group 2, Doctors)
Another participant commented,
If we don’t meet the cultural needs while they’re in hospital, and try to box them into our Western way of thinking, as soon as they leave the building they’re going to slide back under the radar with no supports and go, ‘well I’m not doing it that way’. (Focus Group 4, Allied Health Workers & Nurses)
Another focus group discussion:
… like people when they have their exam, but the doctor can tell them, ‘You can have lumpectomy or mastectomy. What do you think?’ ‘What I think? Who I am to decide? You are a doctor’. Back in their country, they’re not making this decision. You just go to the doctor, have mastectomy, full stop. No negotiation.
True.
You can’t understand the system. (Focus Group 3, Allied Health Workers)
As shown above, there were a range of logics to make sense of cultural difference in the context of decision-making. There were perceptions of the valorisation of choice in normative, ‘Western’ therapeutic models (bearing in mind we treat this as narrative form, rather than a set or fixed entity), and a juxtaposition of various ‘Western values’, often articulated in terms of autonomy and open disclosure. We view such narrative forms, as mentioned above, as reflective of the ontologies they work within (and around). But, they are at work, in care settings, and this was clear in how participants articulated the juxtaposition between ‘the norm’ (a fantasy of the acultural Anglo encounter) and ‘the different’ (the non-English speaker, the foreigner, the new arrival, the non-Australian). For example, the doctors often articulated these dynamics via a deficiency logic, talking about patients as not interested, engaged or even capable of choosing (vis-à-vis a different relational dynamic):
… I think some cultural groups are just incapable of making that decision and they just want to be told what to do and they come from a life of where the doctor just says, ‘You do this’, and ‘you do it’ … say there’s a couple of different choices and I feel people just won’t decide, want me to decide, I guess you just do need to take a lot more time to understand why they need to choose their own path, because they’re the one who’s got to live it. (Focus Group 8, Doctors)
The allied health professionals also discussed the dynamics of choice, cultural biographies and struggle:
I think they really struggle, particularly when you’re being presented, ‘Okay, well you’ve come in with this complication. We can do this treatment, which is chemo treatment, or you can have an acidic tap or you can have this or you might die’, and they go, ‘Well, what should I do?’ I think that’s hard for most people, but if you’re facing linguistic and cultural things and they’re not used to being asked what decision to take, and I think it must be hard on the medical staff explaining because they don’t want to make the decision for the patient and then it’s hard because – it gets hard for everyone and our traditional version of consent isn’t the same with those patients. (Focus Group 6, Allied Health Workers)
Our analysis here does not sideline the genuine struggles of professionals in managing disjunctions in expectations. Rather, we are interested in unpacking the cultural logics of therapeutic problems. Here, we see the idea of the deficient migrant through the valorisation of choice and its position as an Anglo-Saxon individualist cultural phenomenon. This idea of the deficient migrant carries with it assumptions about the capacity and literacy of the patient vis-à-vis the capability of the clinician in negotiating a different therapeutic dynamic. Two factors combine here to construct a passive and somewhat inferior subject: perceptions around migrant patients as vulnerable (because of their past experiences) and assumptions of difference in experiences with previous health services. These assumptions position a person less capable of decision-making, individual choice or negotiating with an expert. Moreover, such assumptions conceal issues such as lack of trust in the health system, concerns about perceived racism/discrimination and lack of access to support among many other factors which may shape a patient’s reluctance to ‘choose’.
Discussion
In this article, we sought to unpack some of the logics which underpin everyday practice within the Australian cancer care context (and perhaps beyond). Our analysis revealed complex configurations of culturally and linguistically diverse groups, and some problematics therein. Importantly, our findings highlight the distancing of such cultural categories, specifically and frequently accounted for by participants through discourses of (albeit sometimes lacking) care and intimacy. We are not against categories – they are a vital facet of social life – rather, their unreflective use and the importance of highlighting their enmeshment in power (and caring) relations in everyday clinical practice. That is, as Anthias (2013a) notes, Categories are part of the social landscape as forms of discourse and practice and enter into the social field as primary units of social representation and social organisation … they exist within spatial and temporal contexts and are emergent rather than given and unchangeable, located in the operations of power … (p. 7).
‘Culture’ is an exemplar of a contemporary categorical conundrum as healthcare professionals seek to grapple with what ‘culture’ means (if anything) and how it should be approached, often without a clear idea on how to do so. Thus, here we asked how ‘culture’ as a category is achieved, resisted, elided, produced and reproduced, in everyday oncological work (Kagawa-Singer et al., 2010). And importantly, we sought to move backward and forward from culture-as-categorisation – as neatly bounded or fixed (cf. Isar, 2006) – to the complexities (and intersectionality) of biographies and personhood in everyday life. This was set against the backdrop of on-going efforts across many health service environments to further incorporate diversity as a meaningful aspect of their models of care. Resolving the tensions between culturally competent care in practice rather than ideologically is difficult. Operationalising ‘culture’ within everyday care often entails gravitation towards understandings of culture that can be easily applied (cf. Dorazio-Migliore et al., 2005). The convenience of these concepts is that they can become interpretive lenses which ‘simplify the cultural complexities surrounding the position(s) of both the health care providers and their clients’ (Dorazio-Migliore et al., 2005: 339). Indeed, the very notion of cultural competence is problematic, and the line between general competence and cultural competence is unclear (Kietzmann et al., 2015). ‘Awareness’, for example, is difficult to pin down in terms of attainment, while the relational aspects of competence (e.g. empathy) are already key to person-centred care. Moreover, achieving cultural competence often entails a procedural implication of culture as a separate or distinct area, further reinforcing the grouping or categorising of ‘culture’ within healthcare (see Kietzmann et al., 2015).
As evident in the focus groups, practices of ordering and categorisation around ‘culture’ clearly risk subsuming the complexity of personhood within the simplistic practice of everyday othering (cf. Isar, 2006), ignoring the multiple dimensions of personhood, and necessarily involve ‘boundary-making and hierarchy-making processes’ (Anthias, 2013a: 6). Furthermore, these processes have flow-on effects for intimacy and care (and carelessness) on the ward. This is accompanied by various practices of valorisation (‘cultural’ ideas about choice, autonomy). Moreover, the accounts – at least those of the non-medical groups – speak to the focus on complex personhood, and entanglements of culture, family and ‘class’. Such ideas entail an assumption of difference and the additive framing of ‘diversity’: in this case, the attaching of additional considerations or facets to be accommodated (or not) within care.
The focus groups – although variable in perspective across participants and groups – consistently emphasised the importance of biographical consciousness and reciprocity (for patient and professional). And, moreover, the groups revealed that a focus on complex personhood (i.e. multiple aspects of the person) is a more meaningful way into offering quality care, given that it incorporates practitioners and persons not viewed as ‘other’. An emphasis on persons and complexity acknowledges everyone’s biographical contributions to an encounter or social milieu, rather than focusing on singular ideas of the problems or characteristics of those who are deemed different. This speaks to an important logic of intersectionality, of awareness and reflection of biographical complexity; for as Nash (2016: 16) posits, intersectionality is ‘an analytic that describes the systems of domination which ensnare us all, even as we are ensnared in different and socially contingent ways’.
The groups revealed just some of the dynamics that emerge within, and through, relations of categorical hierarchy (i.e. migrant, culturally diverse, non-English speaking), including inferiorisation, distancing and simplification (cf. Vertovec, 2012). Whether intended, explicit or even consistent across clinicians (and beyond those who participated here), it is clear that the problem of culture is in fact a problem of understanding relationality, self and other persons. And, moreover, our findings speak to the importance of instilling complexity in our understandings of all persons within the therapeutic environment (family, patient and professional). Culture, we posit, should be explored in relation rather than in individualised terms – as a category or categories that may resonate more or less with the person – that is, ontologically embedded rather than set or uncontested. Moreover, power lies in how culture is treated in the therapeutic encounter, which it is not a neutral concern, a practice of accommodation, or of seeking understanding by the norm. Such ideas both conceal power relations, biographical contributions (across stakeholders) and reinforce deficiency logics which create culture-as-problem.
This article is part of the process of focusing attention on culture, ethnicity and migrancy, with an interest in ‘how they manifest themselves as categories of action in local and specific contexts and in terms of people’s lives’ (Anthias, 2013a: 7). We also view the outcomes of this work as pertinent to the broader and persistent struggle within medicine – in this case oncology – to adequately conceptualise genuine person-centredness and how this can be achieved (Dubbin et al., 2013; Epstein et al., 2005; Epstein and Street, 2011). A critical conceptual novelty of the findings presented above is the importance for developing policy and clinical guidelines that recognise complex personhood and biographies as central to the accomplishment of genuine person-centred care in everyday clinical settings. Currently, while some facets’ (and some actors’) biographies are routinely acknowledged to do work in medical encounters (Niner et al., 2014; Yeo et al., 2005), expanding this understanding in line with the outcomes of this study would also foster this broader move towards sensitivity to the person as a whole, rather than a particular categorical facet of the person. Policies simply focused on recognising ethnicity and culture are likely to side-step the varied significance of these ‘factors’ versus other dimensions of person, relationship and community.
A renewed focus on person-centred care within policy – which brings together current work in ‘person centredness’ and ‘cultural awareness’ – to improve and refine the ways by which complexity and intersectionality is understood within healthcare may assist health professionals to improve biographical consciousness (culturally and otherwise) within therapeutic encounters. Finally, our findings point to the importance for policy-makers in developing relational frameworks within healthcare, shifting overt emphasis away from categorical or individualised conceptualisations of the patient, towards models of care which centre on relationships and interactions between people.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Australian Research Council (Linkage Grant LP160100100).
