Sociology of Health & Illness Vol. 37 No. 7 2015 ISSN 0141-9889, pp. 988–1006 doi: 10.1111/1467-9566.12280

Trust, choice and obligation: a qualitative study of enablers of colorectal cancer screening in South Australia Paul R Ward1, Cushla Coffey1 and Samantha Meyer2 1 2

Discipline of Public Health, Flinders University, Australia School of Public Health and Health Systems, Waterloo University, Canada

Abstract

Colorectal cancer (CRC) has the second highest cancer prevalence and mortality rates in Australia. The Australian National Bowel Cancer Screening Program (NBCSP) aims to increase early detection of CRC by offering free faecal occult blood testing. The NBCSP aims to offer choice to consumers about whether or not to participate in screening. This article presents data on trust, choice and perceived obligation to participate in the NBCSP by population groups with low uptake. A qualitative study was undertaken in South Australia. We interviewed 94 people from four culturally distinct groups: Greek, Iranian, Anglo-Australian and Indigenous peoples. This article demonstrates the complexity of factors shaping the choice, or lack thereof, to participate in the NBCSP. Informed choice is based on adequate knowledge, although this varied among our participants, highlighting the need for more health education in appropriate languages. An obligation to participate was found in the Iranian and Anglo-Australian groups and resulted from an established personal relationship with the doctor, a sense of duty, the acknowledgement of government investment and appreciation. Overall, this article makes a link between trust, choice and obligation, adding to literature on the sociology of trust and medical screening and highlighting important issues in the need of a policy and practice to improve CRC screening rates.

Keywords: trust, choice, obligation, colorectal cancer screening, Australia

Introduction Preventive health care, especially secondary prevention, is provided to people who have yet to develop symptoms, in the hope of preventing the onset of illness or disease (or, at least, diagnosing it at an early enough stage for it to be treatable) (National Preventative Health Taskforce 2008). The people targeted by preventive healthcare programmes therefore do not fit the traditional mould of patients (Bissell et al. 2004, Cawston and Barbour 2003), at least, in a Parsonian manner (Shilling 2002), since they are not looking for treatments to deal with their illness as they are not in the sick role (Parsons 1951). In this way, one may see them as consumers who have a choice whether or not to participate in, and trust or distrust the preventive programme. Obviously, patients have a choice whether or not to see a doctor or follow their advice, and their choice is often based on trust (Brown 2008, Calnan and Sanford 2004), but © 2015 Foundation for the Sociology of Health & Illness. Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

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the consequences of not doing so are quite different in a preventive healthcare programme. The consequences of not taking a doctor’s advice for an existing illness may be the worsening of symptoms or the prolonging of pain. The consequences of not participating in a preventive healthcare programme may be much more difficult for consumers to ascertain, since they are asymptomatic and may have little or no knowledge about the preventive healthcare programme or the illness it is aiming to prevent or detect early (Calnan and Rowe 2008, Willis 2004). In addition, they may have little knowledge on their risk of having the illness, and even with that knowledge, may have difficulty in deciding whether the perceived risk merits action, and if so, what kind of action is appropriate (for example, whether consulting with a doctor or undertaking the preventive screening test). In this article we explore the issues of knowledge, trust and choice in the context of the National Bowel Cancer Screening Program (NBCSP) in Australia. Our data are derived from a qualitative study including 94 in-depth interviews with people from culturally and linguistically diverse population groups who have been shown to have low levels of participation in the NBCSP (Ward et al. 2011a, 2011b). We purposefully sampled Greek, Iranian, Indigenous Australian and Anglo-Australian people to explore potentially different reasons for participating (or not participating) in the NBCSP, to uncover any general barriers to or facilitators of participation across the groups. We have previously published data on general barriers to and enablers of participation in the NBCSP (Javanparast et al. 2012), and the potential role of primary healthcare practitioners in facilitating improved participation rates (Ward et al. 2011a). Given the centrality of having an informed consumer before informed choices can be made, we focused on participants’ levels of knowledge and awareness of colorectal cancer (CRC) and the NBCSP. Our article explicitly links the sociology of trust (Giddens 1990, 1994, Luhmann 1979, 1988) to the sociology of medical screening (Armstrong and Eborall 2012), and in doing so, we extend the literature on the sociology of trust by providing data on what is almost the opposite of choice – perceived interpersonal and institutional obligation. The concept of moral obligation has been studied in relation to screening for cervical cancer (Bush 2000, Howson 1999, McAlearney et al. 2012, Orbell 1996, Tacken et al. 2007) and breast cancer (Griffiths et al. 2010). However, it has not been studied in relation to CRC screening. Recent articles on enhancing participation in cancer screening in general, as opposed to screening for specific cancers, found that obligation was a key factor in determining patient uptake (Howell and Shepperd 2013, Rychetnik et al. 2013, Torke et al. 2013). We argue that the concepts of interpersonal and institutional obligation are new and important findings, particularly because they question the necessity of having trust in preventive screening. Both Howson (1999) and Griffiths et al. (2010) articulate the different forms of obligation women feel to participate in cervical and breast cancer screening, which range from the expectations of ‘being a good woman’, being a good mum’ to being a ‘good citizen’. Both cervical and breast cancer screening are undertaken by a healthcare professional in a health clinic and often linked to or piggy-backed onto current health services. In addition, the medical surveillance of women’s bodies has happened to a much greater extent than that of men (McKie 1995), leading to more research on moral obligation in breast and cervical cancer screening. However, CRC screening is undertaken at home, with no or little direct involvement of healthcare professionals, and it is offered to both men and women. Therefore the discovery of a feeling of obligation to screen for CRC is particularly interesting, suggestive of a broader reach (in addition to breast and cervical screening) of surveillance medicine (Armstrong 1995). The different contexts of these cancer screening services provides sociologists with an opportunity to explore the relevance of sociological concepts such as trust and obligation in order to further expand our theoretical understanding of screening. Indeed, a call was made in a special © 2015 Foundation for the Sociology of Health & Illness

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half the Indigenous participants were unaware that CRC may present asymptomatically, ‘if I’m not in any pain, I’m not suffering and I go to the toilet every day and everything’s regular’ you think ‘why would I need to check?’ (IA5). This absence of symptoms may mean individuals do not prioritise or even think about CRC screening, let alone whether or not to trust it. In Luhmann’s terms, this shows a lack of recognition or a lack of perception of risk, thus meaning that trust in the screening process is not even considered. In this way, people remain confident that they are risk-free from CRC because they are symptom free, thus, to them, do not require screening. The absence of symptoms as a barrier to CRC screening has been reported in other studies (Jones et al. 2010, Katz et al. 2004), including studies with Indigenous Australians (Christou et al. 2010) and Iranians (Salimzadeh et al. 2012). Varying degrees of familiarity with the NBCSP existed; some respondents reported having heard about the programme, some had been invited to participate while others were completely unaware of its existence, as expressed by an Iranian respondent, ‘This programme is very unfamiliar to people. It is unlike skin, breast or other cancers that are advertised too much’ (P7). The lack of familiarity with the NBCSP and the sudden arrival of an invitation in the mail led to feelings of pessimism, complacency and distrust across respondents in all groups, as this one said: ‘Yeah I think getting it through the mail, being unsolicited, is probably – you know, “I don’t know about this” and I won’t think about it’ (AA10). There were also feelings of confusion and suspicion, and questions about being targeted by some respondents over what was regarded as the cold arrival of the invitation kit: When I received it through the post I looked at it and I said ‘oh, why me, what’s wrong?’ This is what I think: ‘What’s wrong? Is there something wrong with me and they picked me? Why?’ (AA2) This anxiety and questioning fuelled a sense of distrust in the system. We have published elsewhere the findings about respondents suggesting the need for GPs to be involved in initial invitations to the NBCSP in order to reduce these feelings, which often lead to not undertaking the test (Ward et al. 2011a). Those respondents in all groups who talked about their knowledge of CRC were motivated to participate in the NBCSP, as stated by one Anglo-Australian respondent: I didn’t enjoy doing it, that’s for sure, but the only thing I really know about it is it eats into the bowel and it can be fatal, can be fatal of course. (AA4) This knowledge of the epidemiology of CRC may indeed lead to participation in the NBCSP, irrespective of whether or not participants trust the screening process. CRC knowledge is critical in facilitating an individual’s perception of risk, thereby creating the necessary conditions for trust considerations. An Iranian respondent talked about how understanding the programme health benefits may allow barriers to be overcome, such as handling faeces, which was considered unpleasant by all respondents: [S]ome factors depend on how much knowledge you have. If you have enough knowledge so you don’t refuse doing a stool exam. Stool is a dirty thing but if you have enough knowledge that why you are doing this test then you don’t care. (P2) © 2015 Foundation for the Sociology of Health & Illness

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Choice and trust in healthcare services and service providers The notion of choice is a central pillar in the rise of consumerism. There has been a great deal of sociological writing on the rise of consumerism in health and health care (Gabe and Calnan, 2000, Hibbert et al. 2002, Lupton 1997, Shaw and Aldridge, 2003) and thus we provide only a short pr
ecis here to provide a context for our data analysis. A useful definition of the role of consumers is those ‘acquiring and/or using goods or services for their own benefit’ (Gabe and Calnan 2000: 255). In the context of CRC screening, this assumes that people know about the screening process (the service) and of the potential benefits of participating in this service. With this knowledge they can then make an informed choice. Informed decision-making is defined as having occurred when: An individual understands the disease or condition being addressed and comprehends what the clinical service involves, including its benefits, risks, limitations, alternatives, and uncertainties; has considered his or her preferences and makes a decision consistent with them; and believes he or she has participated in decision making at the level desired. (Rimer et al. 2004: 1214). In order to further understand consumer rationalities or choices, Gabe and Calnan (2000), following on from others (Edgell et al. 1996), have argued for the existence of two differing agendas which both promote consumerism, but for differing reasons and with differing implications – the New Left and New Right agendas. The New Left agenda is based on the rights of individuals and groups to have a voice, with underpinning values of equity and advocacy. The ideology underpinning the New Right agenda rests on the neoliberal values of the centrality of the market, self-reliance and individual choice. The New Right agenda pushes the neoliberal idea that people will make active choices to participate (or not to participate) in CRC screening because they embody and enact ideas of individual responsibility and self-reliance. In this view, a person ‘should’ screen for CRC because they have a personal obligation to look after themselves, keep themselves healthy and prevent themselves from becoming ill. The New Left agenda pushes a more citizen-based idea that people should make a choice to participate because the government, via taxpayers’ money, has provided a population-based prevention programme for the good of the population, setting up a moral obligation to participate in CRC screening. In spite of their differences, both ideologies imply choice, although the ability to make choices actually demands some knowledge and an understanding of the available information (Lupton, 1997). The consumer is therefore framed as an active participant who engages with the available information to make rational and educated choices, in line with the notion of the reflexive actor, a central plank in the reflexive modernisation thesis (Beck et al., 1994). One of the enduring findings in the sociology of health and illness has been the shifting relationships between patients (or consumers) and healthcare professionals (Lupton 1997, Scambler and Britten 2001), which question the asymmetric power relations in the traditional Parsonian doctor-patient relationship and the resultant sick role (Parsons 1951, Shilling 2002). In this analysis, contemporary healthcare consumers are apparently no longer willing to do as they are told and are engaged in reflexive decisions (Giddens 1994). While there is a great deal of literature showing the active decision-making and reflexivity involved in a number of contemporary healthcare contexts (Baron et al. 2008, Cawston and Barbour 2003, Contandriopoulos 2004, Gravel et al. 2006, Henderson and Peterson 2002, Hibbert et al. 2002, Lupton 1997, Rimer et al. 2004, Sanders and Skevington 2003), there is a growing awareness that one size does not fit all – not all people want to or have the capacity to be consumers in all © 2015 Foundation for the Sociology of Health & Illness

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situations. The idea of dependence on health care and healthcare professions has recently emerged as an area of interest in the sociology of trust (Meyer et al. 2013, Ward and Coates, 2006), which argues that choice and agency, and hence trust, are given up in certain circumstances, especially where there is little knowledge or a high risk for patients. We present data in this article that show how some participants, regardless of their level of knowledge of aspects of the screening programme, participated in CRC screening, not through their active choice but through a perceived obligation to healthcare professionals and the healthcare system more broadly. The rise of consumerism in health care has brought the concept of trust to centre-stage. Research examining the association between trust (and distrust) and preventive screening has largely focused on trust in the medical professionals who provide care (Born et al. 2009, Bynum et al. 2012, O’Malley et al. 2004), which is of limited interest in examining the NBCSP, since the initial invitation is from the Australian Government, not a healthcare professional. However, research on the UK NBCSP found that some people participated because they saw it as a right but also their civil duty (Chapple et al. 2008), potentially showing a lack of consideration of trust and instead a sense of obligation and lack of choice. It is argued that if people have high trust in their medical professionals they are more likely to undertake screening or other preventive services (Born et al. 2009, Hall et al. 2001, O’Malley et al. 2004), suggesting a level of transferable trust. However trust may not transfer across all preventive services. A cross-sectional study of trust in preventive services among lowincome African American women found higher trust in health–centre-based procedures (for example, a Pap smear, clinical breast exam, blood pressure measurement, diet counselling) than in screening undertaken outside health centres (for example, a mammogram and FOBT) (O’Malley et al. 2004). Therefore, trust is related to both interpersonal (for example, doctor) and systems-based (such as health centre) factors, echoing sociological theory (Giddens 1990, 1991, Luhmann 1979, Meyer et al. 2008). Our former work following others such as Calnan and Rowe (2008), Giddens (1994), Holmstrom (2007), Luhmann (2005: 12–13), Meyer and Ward (2013), Taylor-Gooby (2006) and Watson and Moran (2005) identifies the centrality of the notion of risk in the decision to trust. The role of choice, however, is also paramount in discerning between trust and related concepts (Calman 2002, Calnan and Rowe 2008, Kao et al. 1998). In addition, Luhmann argued for distinctions between trust/confidence (Luhmann 1979, 1988, 1995) and trust/familiarity (Luhmann 2000). Further distinctions have been made between trust and dependence (Meyer et al. 2013, Ward and Coates, 2006) which we also provide evidence for, but our analysis moves the literature forward by providing a further distinction between trust and obligation. For the purpose of this article, we discuss trust primarily in relation to the conceptualisations of Luhmann and Giddens, since they both argue for reflexivity (and hence informed choice) as guiding requirements of trust. However while, for Luhmann and Giddens, reflexivity or ‘internal conversations’ (Sayer 2005: 29) is a key marker of trust (as opposed confidence), we need to be mindful of Bourdieu’s warning that sociologists should not to assume that all lay people share the same ‘lust for reflexivity’ as academics. In this way, there is a danger of projecting the special features of academia onto the lifeworlds of those we research, and therefore making assumptions based on our own rationalities rather than recognising the multiplicity of rationalities. However, there is also a danger of ‘denying or marginalising the mind of others’ (Sayer 2005: 29), by taking Bourdieu’s call too far, and assuming that the lay populace is full of unreflexive, docile bodies. Indeed, numerous sociological studies have found reflexivity common in the lay populace (Archer 2003, Williams 2000, Williams and Popay 1994). While we are mindful of these debates, in keeping with Luhamnn’s conceptualisation of trust which includes reflexivity, our analysis of lay accounts of trust took into account the reflexive nature of trust © 2015 Foundation for the Sociology of Health & Illness

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relations. In doing this, we do not fall foul of Bourdieu’s concerns because we do not make a moral statement about whether or not people should be reflexive, just about the nature and extent of choice in screening participation as it relates to trust and obligation.

Methods This was a qualitative study, based on interviews with people from different cultural groups in South Australia, conducted between July 2009 and December 2010. In-depth, focused interviews were conducted with four sub-groups aged between 35 and 75 years: Greek, Iranian, Anglo-Australian and Indigenous Australian. Our earlier research found that CRC screening rates were lower for culturally and linguistically diverse populations than for English-speaking groups, and we therefore purposefully sampled specific culturally diverse groups. The selection criteria used to purposefully select the specific population groups were the sub-group’s population size in South Australia, the average age of the sub-group, their average length of stay in Australia, and the resources available to ensure study feasibility. On the basis of the findings of our epidemiological analysis of NBCSP participation rates in South Australia (Ward et al. 2011a, 2011b), we selected a number of geographical areas with high and low rates of NBCSP participation, and advertised in local newspapers in these areas. People were interviewed, from both genders, a range of ages and all areas sampled. Participants who identified themselves as Greek or Iranian were recruited in these areas by liaising with community association staff and putting up posters at community associations and advertisements on local community radio stations in relevant languages. The Anglo-Australian participants were recruited through advertisements in local free newspapers in the areas identified. Indigenous participants were recruited from both metropolitan Adelaide and rural and remote South Australia in order to understand any geographical barriers as a result of rural and remote location. The Iranian interviews were undertaken in Farsi and translated into English by the researcher whose first language is Farsi, and thus external validation of the transcriptions were not undertaken. The Greek interviews were undertaken by the researcher together with a Greek translator who translated both the questions (into Greek) and the answers (into English). The English portions of the text (questions and answers) for the 20 Greek interviews were transcribed. To assess accuracy of the translations undertaken during the interview process, we also employed an accredited Greek translator to translate the Greek versions of the question and answers for four randomly selected interviews. We then compared the versions translated during the interviews and those by the independent translator and found very close accuracy. The interviews lasted for almost one hour and were held at a venue convenient to the participants. All participants provided their full and informed consent to participate in the study. The interviewers explored knowledge and experience of bowel cancer and the screening tests, and barriers to and facilitators of bowel cancer screening uptake with a focus on the NBCSP and whether or not the participants had been invited on and had participated in the programme. The screening pathway was explained and the test kit was shown to participants who had not been invited onto the screening programme. The screening pathway was simply described using the leaflets produced by the Australian Government. The information sheets provided details of bowel cancer, risk factors, the process of the screening programme, undergoing an FOBT and what would happen if they got a positive test. The researcher made it clear that she was not from the Australian Government and was simply a social scientist trying to understand barriers to and enablers of participation in the NBCSP. All respondents were © 2015 Foundation for the Sociology of Health & Illness

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asked identical questions in the same sequence but the interviewer used participants’ responses to ask supplementary questions that clarified issues (Guest et al. 2006). Ethics committee approval was granted by the Flinders University Social and Behavioural Research Ethics Committee, and the Aboriginal Health Research Ethics Committee.

Data analysis All interviews were audio-recorded and transcribed by a professional transcriber (Anglo-Australian and Indigenous groups), interviewer (Iranian group) or the interpreter (Greek group). Following transcription and checking for accuracy, interview data were loaded into the qualitative software package, NVivo 8. Our overall analytical toolkit was drawn from critical realism, and particularly the three stages of induction, deduction and abduction (Danermark et al. 2002, Meyer and Lunnay 2013, Meyer and Ward 2014). Induction involved drawing general conclusions from a thematic analysis of our data whereas deduction involved comparing and contrasting these findings with conceptual frameworks in the sociology of trust, in order to confirm or contest these theories. Abduction then allowed us to capture and analyse data that fell outside the conceptual frameworks, introducing novel ideas and a critical analysis of the sociology of trust. In order to practically employ the critical realist method of analysis, we undertook three consequential layers of analysis, derived from grounded theory: open coding, focused coding and theoretical coding (Glaser and Strauss 1967, Strauss and Corbin 2004). Our open coding, linked to the process of induction, provided a description of the issues or themes arising from the data. This was undertaken throughout the data collection process and our initial open coding informed the content of subsequent interviews. Each interview was transcribed directly (after relevant translation if required) after the interview so that the data analysis and collection could be compared. When open coding, words or sections of text were coded using the actual words used by participants (in Nvivo codes), or by grouping similar words conceptually. Focused coding fulfilled the process of deduction by grouping the open codes into larger categories. This stage involved an iterative process of categorising each of the initial open codes into larger categories, based on their semantic fit or the ways in which they seemed to be relating to a similar idea or issue. Theoretical coding facilitated an examination of the data from a theoretically informed perspective, performing the stage of abduction. Theoretical coding conceptualises the possible ways that focused codes relate to each other to explain a theory (Charmaz 2006). This stage was conducted by examining the focused codes with regards to the theoretical and empirical literature on trust, highlighting data that both conformed to current theories of trust and also new data (the process of abduction). Importantly, data that fell outside the current social theory on trust were retained using abductive inference, thereby retaining and even honouring the interpretive epistemological basis of qualitative research.

Results The data presented in this article relate specifically to trust-related concepts, predominantly from Luhmann’s and Giddens’ conceptual frameworks. Firstly, we present data on the knowledge that participants had of CRC and the CRC screening process. This is important when analysing trust, since knowledge of these issues (or lack of knowledge) will impact on © 2015 Foundation for the Sociology of Health & Illness

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participants’ perceptions of their risk of getting cancer and also on their perceptions of the effectiveness or utility of undertaking the screening test. We also present data on a new concept that is not discussed by either theorist; namely, obligation, which poses ethical dilemmas in the era of informed consumer decision-making. The ethical question relates to having a screening process based on active choice and hence trust, or based on lack of choice and hence feelings of obligation. In total we interviewed 94 people: 24 Iranian, 20 Greek, 27 Anglo-Australian and 23 Indigenous Australian. The speakers in the extracts were coded as follows: AA, Anglo-Australian, G, Greek, P, Persian (Iranian) and IA, Indigenous Australian. Approximately a third of our sample (n = 30) had undertaken the CRC screening within the past 2 years (6/24 Iranian, 8/20 Greek, 8/27 Anglo-Australian and 8/23 Indigenous Australians).

Knowledge of CRC and CRC screening Luhmann (2000) argues that trust presupposes and can occur only in situations of familiarity, thereby arguing that people need prior knowledge about the CRC screening process before they can decide whether or not to trust it. This informed decision implies an active and reflexive role in decision-making and hence, a review of the participants’ knowledge of CRC screening is warranted. We found varying levels of cancer knowledge by participants in our study, and in particular CRC and CRC screening knowledge. Of particular importance to this article was the relationship between fatalism and the concomitant futility of undertaking screening; something which has been found in research related to cancer (Macdonald et al. 2013). Many Anglo-Australian respondents viewed cancer as preventable and treatable, although many Indigenous, Greek and Iranian respondents viewed cancer as fatal: I think – well from what a few people have said – and I think this is the general view of the Aboriginal community – that if you’ve got cancer you’re going to die so you just give up, there’s no point [in undergoing CRC screening]. (IA9) On a similar note, a Greek respondent talked about some of the cultural reasons for not undertaking CRC screening: Cancer, for people in the Greek community, is like a death sentence. When they hear the word cancer, they think that’s it. They don’t like to talk about it; they even hide it from their families. (G21) This perception of cancer also links to risk, whereby the risk of cancer is just so large (that is, death) that trust in screening becomes irrelevant – there is no point considering whether or not to trust the NBCSP if you think that cancer is fatal, therefore even if found by screening, the perception is that nothing can be done. A personal or family history of cancer was associated with an appreciation of the health benefits of preventive screening, personal vulnerability and higher motivation to participate in the NBCSP, as described by one Anglo-Australian respondent, ‘The only reason I completed it because I was persistent and I thought it would be in my best benefit because I had a background’ (AA22). Some respondents from all cultural groups and approximately © 2015 Foundation for the Sociology of Health & Illness

Sociology of Health & Illness Vol. 37 No. 7 2015 ISSN 0141-9889, pp. 988–1006 doi: 10.1111/1467-9566.12280

Trust, choice and obligation: a qualitative study of enablers of colorectal cancer screening in South Australia Paul R Ward1, Cushla Coffey1 and Samantha Meyer2 1 2

Discipline of Public Health, Flinders University, Australia School of Public Health and Health Systems, Waterloo University, Canada

Abstract

Colorectal cancer (CRC) has the second highest cancer prevalence and mortality rates in Australia. The Australian National Bowel Cancer Screening Program (NBCSP) aims to increase early detection of CRC by offering free faecal occult blood testing. The NBCSP aims to offer choice to consumers about whether or not to participate in screening. This article presents data on trust, choice and perceived obligation to participate in the NBCSP by population groups with low uptake. A qualitative study was undertaken in South Australia. We interviewed 94 people from four culturally distinct groups: Greek, Iranian, Anglo-Australian and Indigenous peoples. This article demonstrates the complexity of factors shaping the choice, or lack thereof, to participate in the NBCSP. Informed choice is based on adequate knowledge, although this varied among our participants, highlighting the need for more health education in appropriate languages. An obligation to participate was found in the Iranian and Anglo-Australian groups and resulted from an established personal relationship with the doctor, a sense of duty, the acknowledgement of government investment and appreciation. Overall, this article makes a link between trust, choice and obligation, adding to literature on the sociology of trust and medical screening and highlighting important issues in the need of a policy and practice to improve CRC screening rates.

Keywords: trust, choice, obligation, colorectal cancer screening, Australia

Introduction Preventive health care, especially secondary prevention, is provided to people who have yet to develop symptoms, in the hope of preventing the onset of illness or disease (or, at least, diagnosing it at an early enough stage for it to be treatable) (National Preventative Health Taskforce 2008). The people targeted by preventive healthcare programmes therefore do not fit the traditional mould of patients (Bissell et al. 2004, Cawston and Barbour 2003), at least, in a Parsonian manner (Shilling 2002), since they are not looking for treatments to deal with their illness as they are not in the sick role (Parsons 1951). In this way, one may see them as consumers who have a choice whether or not to participate in, and trust or distrust the preventive programme. Obviously, patients have a choice whether or not to see a doctor or follow their advice, and their choice is often based on trust (Brown 2008, Calnan and Sanford 2004), but © 2015 Foundation for the Sociology of Health & Illness. Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

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The following section presents findings where knowledge and informed choice are less evident and the notions of obligation or reciprocity emerge.

The emergence of obligation The process of abductive analysis led to the development of the concept of obligation, which is not identified as being distinct from trust by either Luhmann or Giddens, thereby highlighting the important and innovative nature of abductive thinking. We originally explored the nature and extent of (dis)trust as reasons for uptake (or not) of CRC screening, but data relating to obligation emerged, which did not fit theoretically with conceptualisations of trust. Rather than attempting to reify trust, and thus submit obligation to vivisepulture, we highlight the importance of both interpersonal and institutional obligation (in the presence or absence of trust) for understanding CRC screening uptake. Before discussing the concept of obligation, it is necessary to demonstrate the apparent power dynamic that existed between doctors and patients (as talked about during the interviews), as it provides a foundation for the obligatory role of the compliant patient. This power and resultant perceived obligation is interesting in the case of CRC screening, because the doctor is not actually involved in the formal screening pathway – it is a letter and then an FOBT in the post. It is more obvious to see the medical power and moral obligation in screening for cervical cancer (Bush 2000, Howson 1998, Howson 1999) and breast cancer (Griffiths et al. 2010), but the pervasive nature of medical power has found its way into a perceived obligation to undertake CRC screening. This even led some respondents to say that they would liaise with their doctor prior to participating in the NBCSP, ‘I consult my doctor before doing it and he would encourage me to do it’ (P20). Participants then talked about how the doctor’s encouragement was necessary if participation was to occur, as indicated by a Greek respondent who talked about his own GP, ‘If he didn’t encourage me, I wouldn’t do it’! (G17). Another respondent said: If my GP said to me ‘we’ve received this from a national study, you’re just the person for it, would you do it?’ and I would say without a doubt – because you do trust your GP because you must – well, I do. (AA10) Simply put, a lack of endorsement by the doctor would result in the individual not participating in the NBCSP. The power dynamic between doctor and patient was further highlighted by the lack of reflexivity in the consideration of medical advice, questioning the notions of informed decision making and patient-centred care: Okay, the doctor suggested it and I – I guess I could say I have a very strong belief in doctors, that if they say do something I tend to do it. If they say ‘take this tablet’ I take it, I don’t say ‘what’s it for? What’s it going to do?’. . . You know, I pay an expert and I’m paying him to tell me so I’ll do what he says. (AA8) The unwavering confidence that the respondent showed in their doctor meant that they did not question the doctor or perceive a risk in not doing so; they merely complied with their instructions. A Greek respondent noted that, irrespective of the content of the doctors’ recommendation, he would obey, in blind faith: ‘if he [GP] tells me to do something, I would © 2015 Foundation for the Sociology of Health & Illness

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do it, it doesn’t matter’ (G22). Another Greek respondent suggested that medical dependence is widespread and should be capitalised upon to increase participation in preventive screening, ‘Many people trust and depend on their doctor so they should try to push these things’ (G11). Certainly, responses from the Greek, Iranian and Anglo-Australians highlighted the power and authority doctors possess and certain patients’ subsequent vulnerability in health care, ‘If my doctor told me to do it, I would do it, because he knows’ (G4). However, given the uncertainties involved in cancer screening and the potential for false positives and false negatives, there have been calls for a tempered and qualified use of medical dominance to increase cancer screening uptake (Carter et al. 2011, Rychetnik et al. 2013). Indeed, a number of Indigenous Australians questioned this blind trust in doctors and other health care workers, for example: I think in some Aboriginal communities . . . you might think ‘that health worker, I don’t trust him’ because I know that person, that person will go straight out there and tell everyone. (IA7). Another Indigenous Australian said: Doctors are funny people, I tell you. They are knowledgeable people but they’re funny in the way that they talk to you and how they are seemingly willing to provide information or are unwilling to provide you with information because it’s what they think is important and not necessarily about what you think is important. (IA1) It is debatable whether individuals participate in such programmes because they trust, comply with or have confidence in the knowledge, skills and expertise of doctors. Some studies suggest that personal, family and social responsibility, citizenship obligation, and the moral aspects play a role in an individual’s decision to participate in disease prevention including cancer screening programmes (Blomberg et al. 2008, Lechner, de Vries and Offermans 1997, Howson 1999, Merweij 1999, Willis 2004). The concept of obligation emerged as an important finding in the compliance of Anglo-Australian, Greek and Iranian groups. Interestingly, Indigenous Australians showed widespread distrust in government, local GPs and the postal service that delivered the CRC (Javanparast et al. 2012), and therefore felt little obligation to participate. Their distrust was often based on perceived institutionalised racism within the ‘white’ institutions of government, for example, ‘I’d say mistrust of the white person, it always has and always will be’ (IA4). A number of Indigenous Australians then went on to say that the poor treatment of Indigenous communities historically continued to influence their distrust in government services, including health care: You know, everything goes down to that with our people, they don’t want to because we’ve had bad experience in the past and they still – in a lot of the older generation and it’s now gone on to the younger. (IA5) This distrust in government was then transferred to a distrust in the NBCSP since it represented ‘government’. Two types of obligation were evident: interpersonal obligation and institutional obligation. Obligation to participate in cervical cancer screening has been found to include an obligation to family (Howson 1999), in that the person is being a ‘good mum’ or ‘good wife/partner’ and thus both modelling preventive health behaviour and doing their best to prevent illness. How© 2015 Foundation for the Sociology of Health & Illness

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ever, these forms of obligation were not articulated by respondents in our study. Interpersonal obligation tended to focus on an obligation to their doctor, rather than their family. Descriptions of interpersonal obligation included not wanting to let the doctor down, having a sense of expectation, responsibility or the threat of being reprimanded that compelled individuals to participate: [I]f your private doctor recommend you it would help. I trust the public sector very much. They definitely do a great job to prepare and sent this stuff. But the truth is that when you are asked to do this face to face and your doctor recommends you feel obliged to do it. So it is why I prefer that. And you do that straightaway. (P19) While this Iranian respondent trusted the public sector, it was the sense of obligation to the doctor that would compel them to undertake the test in a timely manner. The sense of obligation was created by the relationship and loyalty that existed between the respondent and the doctor, as outlined by another respondent: I’d feel a bit more obliged if my personal doctor suggested it, and I can see other people think it’s an invasion of privacy. I don’t take it that way, but I feel a bit more comfortable if my doctor suggested it . . . It’s that personal. (AA16) In this way, the question of whether trust is even necessary for uptake of CRC is raised. We argue that some respondents abrogate responsibility to health professionals and therefore feel obliged to participate, although trust in the doctor-patient relationship is a requirement for obligation because the reciprocity (I trust you, I do right by you and follow your advice) would not exist in its absence. Importantly many respondents did not view their sense of obligation negatively: I think we should be more obliged to do things for our health. So personally I don’t have a problem with my doctor saying to me ‘there it is’. Not go into a great deal but just say ‘take that home, I want you to do that now because that’s a very – you need this as well. (AA2) This quote encapsulates the neoliberal, New Right agenda, of personal responsibility whereby screening should be undertaken. It also links to interpersonal obligation to the doctor, although this was discussed to a lesser extent than institutional obligation and then only by a small number of Anglo-Australian and Iranian respondents. Institutional obligation was reported by over half of Iranian respondents and a number of Anglo-Australian respondents, but by very few Greek or Indigenous Australians. Institutional obligation seems less based on familiarity and personal relationships and more based on an ethical or moral responsibility on the consumer to do what is right, by the institutions they are told are in place to serve public interest, in keeping with the New Left agenda. We found much less evidence for the New Right agenda, which may reflect the lack of knowledge of CRC, including its signs and symptoms, and a lack of familiarity with CRC screening. The obligation, based on personal responsibility, to participate in cervical and breast cancer screening may be related to the greater public knowledge of the aetiology and epidemiology of those cancers, the direct relationship with a healthcare professional performing the screening and the broader media attention given over to breast cancer (Bell 2014, Seale 2002) and cervical can© 2015 Foundation for the Sociology of Health & Illness

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cer (Frith et al. 2013, Marlow et al. 2012). The prominence of the New Left agenda may also partly relate to the initial postal invitation to take part in the NBCSP and subsequent FOBT coming from the Australian Government, outside personal relationships with doctors. However, for Indigenous Australians this was problematic due to their generalised mistrust of government, meaning that neither institution trust nor institutional obligation were voiced in interviews. This also needs to be seen in the context of low knowledge of CRC aetiology or prognosis, resulting in less consideration of participating in CRC screening. Our analysis provides three main reasons as the foundation for institutional obligation. Firstly, there is an acknowledgement of the time and effort that had been invested in the programme implementation: Again it was in the back of my mind, the government or whoever sent it out, or the Cancer Council sent it out, they went to the trouble of doing this why should I turn it down? (AA4) This respondent had very little knowledge of which institution was involved, but just assumed that a faceless institution was trying to help them, thereby meaning that they should return the favour by participating. Secondly, there was an acknowledgement of the financial investment by the government: A sense of duty to a programme that’s – I mean if they’re going to spend a lot of money – if the government is going to spend a lot of money on this there’s a reason for that, they’re not just doing it for no purpose at all, so it’s all – I think it’s almost you’re obliged as a citizen to respond to that. (AA20) This is akin to the appropriate use of tax dollars in a finite financial system, whereby respondents assumed that the government had made decisions about where and where not to invest money, and had decided that the NBCSP was worth the money. This set of assumptions thereby created a felt obligation on the part of respondents to participate in the NBCSP. Thirdly, there was also an intention to assist the government to improve population and individual health resulting from an appreciation of the NBCSP: It should really be appreciated that the government cares about people, even immigrants, who are in the country today and may not be here tomorrow. We should appreciate that. I am really grateful of Australian Government. (P21) Here we see an obligation to reciprocate. Similar to the relationship with healthcare professionals, the idea presented here is that participation in screening is a way of respecting or doing right by a government that looks after the people. The heightened gratitude may possibly have been caused by an absence of preventive services in their country of birth and resulted in a sense of obligation.

Concluding comments At the beginning of this study, and predominantly based on literature on the sociology of trust, we examined the proposition that trust is essential in participating in CRC screening because © 2015 Foundation for the Sociology of Health & Illness

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people do not know about CRC screening and hence, trust is a way of bridging their uncertainty. Certainly our data confirm the existence of varying levels of knowledge of both CRC and the screening process, and this may have an impact on trust and subsequent participation in screening practices. There were no major differences in knowledge or in questioning the effectiveness of the FOBT between the people who had and had not participated in the NBCSP. The information sheets provided by the Australian Government that people receive with the FOBT provide very general information on the effectiveness of the FOBT, although information on the sensitivity and specificity of the FOBT are provided on their website. However, for older people, and especially for those for whom English is not a first language, offering this information only on a website may act as a barrier to participation (Goodall et al. 2010). There is an obvious need for appropriate health education about the efficacy of medical treatment for CRC if it is found at an early stage, which may increase awareness of the benefits of undertaking the screening and thus, of the potential utility of participating in CRC screening, although the ultimate decision on participation needs to remain with the individual members of the public. Additional findings led us to argue that participation in CRC screening does not depend only on being given more information. More central to participation are the notions of obligation or reciprocity which, as is evident in our findings, are relevant to what we have referred to as interpersonal and institutional obligation. Interpersonal obligation was found to be predicated on familiarity and trust, and was associated with the role of the powerful doctor and the compliant patient. Decisions to participate, or not, in CRC screening was not as obvious in the findings of institutional obligation, although we acknowledge that it may be that our research design did not lend itself to a depth of investigation (such as explicitly asking individuals about their trust in the range of institutions) upon which we could draw this conclusion. Our findings raise an issue in relation to the ethics of screening (Carter et al. 2011, Rychetnik et al. 2013). In order to increase participation rates in CRC screening, a stated aim of the Australian Government, our findings suggest that there is a need to capitalise on developing and consolidating trusting relations between doctors and patients and integrating doctors into the screening process. There is a specific need for culturally safe strategies to increase trust with Indigenous Australian groups, including trust in GPs and government. However, one might argue that these may create a sense of obligation, as opposed to free choice, to participate in CRC screening. While it may be true that some individuals are willing to have superficial medical knowledge, relinquish some of their decision-making and autonomy and feel dependent on or obliged to follow their doctors’ recommendations, this may leave individuals open to exploitation and potential harm (Carter et al. 2011), particularly in medical systems increasingly overburdened with ageing populations (Coulter 2004, Rychetnik et al. 2013). Overall, this article has demonstrated the complexity of factors shaping the choice, or lack thereof, to participate in the NBCSP. Interpersonal obligation was identified in the Iranian, Greek and Anglo-Australian groups, linked mainly to trust and established personal relationships with a doctor. Widespread distrust by many of the Indigenous Australians led to a reduced sense of interpersonal obligation. Institutional obligation was mainly found in Iranian and Anglo-Australian respondents, symbolised by a sense of duty, acknowledgement and recognition of government investment and a feeling that ‘if the government is paying for it, it must be worthwhile’. The feeling was quite different for Indigenous Australians who had experienced highly negative experiences by government and state institutions throughout their own lives and those of their ancestors, leading to distrust and reduced or no felt institutional obligation. In his conceptualisation of trust, Luhmann (2000) makes a distinction between trust and confidence as well as trust and familiarity. This article distinguishes between trust and © 2015 Foundation for the Sociology of Health & Illness

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obligation, adding to literature on the sociology of trust and the sociology of medical screening. In some circumstances, there was a feeling of interpersonal obligation, whereby trust in a GP’s advice led some respondents to feel morally obliged to take it. In this way, trust may presuppose interpersonal obligation but still leaves open the question of the extent to which agency is reduced. A positive reading would be that respondents have already used their agency to decide to trust the doctor and are now just following through with this. We argue that institutional obligation involves much less agency and is based on more assumptions as opposed to reflexive decisions by respondents. To encourage institutional obligation it may be necessary to give more health education so that respondents can become more informed about their assumptions and can make choices based on knowledge, rather than just assuming that governments are always acting in the best interest of the public. Luhmann (2000) argues that trust requires a reflexive and conscious choice, therefore an individual who feels obliged is not trusting. Coercion can be defined as a form of forcible constraint and may range from ‘reasonable’ to ‘unreasonable’ (Carter et al. 2011). An individual who is obliged has no agency and can be described as being coerced to act. Unreasonable coercion is a central concern in public health ethics. It may include forcing individuals to participate in CRC screening, thus encroaching on their liberty and autonomy (Carter et al. 2011). The concept of obligation as a new semantic distinction in understanding participation in CRC screening and its relationship with trust requires further research. Address for correspondence: Paul Ward, Flinders University, Health Sciences Building (2.10), GPO Box 2100, Adelaide 5001, South Australia. E-mail: [email protected]

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