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published online 1 April 2014Health (London)Sasha Scambler, Paul Newton and Koula Asimakopoulou

The context of empowerment and self-care within the field of diabetes  

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The context of empowerment and self-care within the field of diabetes

Sasha ScamblerKing’s College London, UK

Paul NewtonUniversity of Greenwich, UK

Koula AsimakopoulouKing’s College London, UK

AbstractThere is a growing emphasis within the diabetes literature on the importance of empowerment as a way of encouraging people to take control of and responsibility for the successful management of their disease. Patients are actively encouraged to become active participants in their care, and there is an expectation that health-care professionals will facilitate this process. This article uses Bourdieu’s concept of field, as a bounded social space in which actors conduct their lives day-to-day, to explore the context within which issues of empowerment are addressed and negotiated. The practice of empowerment within the biologically defined and biomedically ‘policed’ field of diabetes is explored using empirical data from a study of diabetes health-care professionals’ understanding and practices around empowerment. It is concluded that rather than promoting active self-management and empowerment, the nature of the field of diabetes, and in particular its privileging of the biomedical, can mitigate against people with diabetes negotiating the field effectively and taking control of the disease and its management.

KeywordsBourdieu, diabetes, empowerment, medicalisation

Corresponding author:Sasha Scambler, Unit of Social & Behavioural Sciences, King’s College London Dental Institute, Central Office, Floor 18, Tower Wing, Guys, London, UK. Email: sasha.scambler@kcl.ac.uk

524801 HEA0010.1177/1363459314524801HealthScambler et al.research-article2014

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Introduction

Chronic or long-term conditions are a feature of modern or developed societies. In 2010, four such conditions – heart disease, respiratory disease, common cancers and Type 2 diabetes – claimed more than 35 million lives, that is, about three out of every five deaths in the world (Stuckler and Basu, 2011). In developed societies like Britain, it has long been recognised that long-term conditions are likely to increase as the population ages, presenting a growing challenge to the delivery of appropriate, cost-effective health and social services. It is against this background that a discernibly new emphasis on ‘self-management’ has emerged. Self-management, it has been suggested, might at one and the same time help constrain the ever-escalating costs of treatment and care and give more autonomy and choice to patients. Self-management, in other words, has the poten-tial to cut costs and promote empowerment.

This article concentrates on one of the contexts, or in Bourdieu’s (1990) terminology, ‘fields’, within which opportunities arise for patient empowerment: episodes of interac-tion with health professionals. In the remaining introductory paragraphs, we explore the emergence of the language or rhetoric of ‘empowerment’ and the different concepts invoked by use of the word. We then give a brief outline of a small exploratory study of health professionals’ understandings of empowerment in relation to Type 2 diabetes, as we have seen a significant threat worldwide as well as in Britain. The results from this study are presented in some detail, showing not only that empowerment is a term easier to commend than define but also that there are likely gaps between health professionals’ definitions and their work practices.

A possible framework for understanding and theorising these findings is then posited and briefly summarised; this derives from the work of Bourdieu. We accept that the sali-ence of this framework cannot simply be inferred from our data (which are essentially used to illustrate its likely utility), but we offer two propositions that comprise the core message of the article. First, we suggest that Bourdieu’s work affords a way of analysing ‘empowerment in practice’, and second, it seems apparent that if this framework is pro-ductive in relation to Type 2 diabetes, it is likely to be of relevance also to a wide range of other long-term conditions afflicting people in Britain and further afield.

What is ‘empowerment’?

Empowerment is often defined as a process of education and skill development that ena-bles people with long-term conditions to take responsibility for the daily management of their illness. The formal idea of self-management was introduced into the National Health Service (NHS) with the ‘NHS Improvement Plan’ (Department of Health (DofH), 2004). This document laid out a model of care based on a Californian plan to provide health care for people with long-term conditions. The ‘Kaiser’ model incorporated three levels of care, with high-risk patients receiving professional care, a ‘shared-care’ approach for those in the middle and self-management for the low-risk majority (Bury, 2010). This model was judged effective in California, and as a result, ‘Chronic Disease Self-Management’ programmes were put in place with the aim of ‘giving patients the knowledge and skills to manage their illness daily’ (Lorig, 2002: 814).

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The self-management/empowerment approach to the provision of care for people with long-term conditions has been adopted ‘in principle’ across the NHS. One example of the model in practice can be found in the development of diabetes care. In Kaiser model style, high-risk patients and those with complications are seen in the diabetes clinic; patients who, for whatever reason, are not achieving good symptom control are seen by Diabetes Nurse Specialists to develop a shared-care plan, set targets and be ‘empowered’ (be given the tools and knowledge to self-manage their diabetes); and low-risk patients attend, or are invited to attend, education courses and to access community services as and when needed. A ‘collaborative’ of NHS organisations (The Diabetes Education and Self-Management for Ongoing and Diagnosed (DESMOND) Collaborative 2008) have put together a series of education programmes under the rubric of DESMOND, and nurses and other allied health professionals are being trained in how to ‘do’ DESMOND (Varty and Varty, 2006). Empowerment is widely seen as a positive devel-opment within diabetes care as it heralds a move away from a paternalistic notion of ‘compliance’ towards a more patient-centred notion of self-management (Asimakopoulou, 2007). Tying in with the ubiquitous shift towards consumer health care and patient choice championed by the New Labour government, this can be seen as a positive move in rec-ognising the knowledge and skills which develop over the course of living with a long-term condition and prioritising experiential expertise in daily life over medical interventions.

Problems with empowerment in diabetes care emerge when we try to define ‘success-ful empowerment’. If empowerment is about giving people the skills to manage their disease, then how do we judge whether the empowerment has been successful? What seems clear from the literature attempting to define and critique the concept is that there is confusion and disagreement not only about how success should be measured but about what the term empowerment actually means (Anderson, 2007; Asimakopoulou, 2007; Asimakopoulou et al., 2010b) and the barriers faced by health-care professionals (HCPs) when they attempt to practise in clinic (Adolfsson et al., 2004). As has been anticipated, this article will draw on Bourdieu’s concept of field to contextualise the practice of empowerment within diabetes care and to explore both the parameters within which empowerment is deemed successful and who makes this judgement. A brief exploration of the concepts of empowerment and self-care are presented before Bourdieu’s concept of field is deployed to help frame the practice of empowerment.

The practice of empowerment and self-care in diabetes

Empowerment in relation to diabetes care has been defined as ‘[a] process whereby patients have the knowledge, skills, attitudes and self-awareness necessary to influence their own behaviour and that of others in order to improve the quality of their lives’ (Funnell et al., 1991: 38). This definition/model has a number of presuppositions: it ‘is based on three fundamental aspects of chronic illness: choice, control and consequences’ (Funnell and Anderson, 2004: 123). This model changes the role of a diabetes HCP from one focused on information transfer to one focused on the facilitation of self-care, thus implicitly adopting a patient-centred approach that allows patients to shape services. Collaborative care is seen to offer partnership and, in some instances, has been shown to

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be more effective than didactic and problem-based interventions in, for example, improv-ing glycaemic control (Dunstan et al., 2002).

A key emphasis of empowerment policy is to enable people with diabetes to manage their own lifestyle and diabetes. Critics suggest that this has resulted in empowerment initiatives shifting costs and resources, vis-a-vis accountability and responsibility, dis-proportionately onto the patient, and that this disadvantages some groups (particularly those from low-income families who are both more likely to be diagnosed with diabetes and less likely to benefit from educational approaches (Knight et al., 2006). In a theoreti-cal article, Asimakopoulou (2007) goes further, questioning the underlying assumptions of the empowerment approach, particularly in the clinical encounter, which for many people provides ‘legitimating’ evidence that they are managing their condition. She sug-gests that the assumption that HCPs and patients are able to communicate effectively without misunderstanding (and in an apparent absence of power relations) is patently flawed and that the information shared in the consultation, if remembered at all, is recalled differently by those involved. Furthermore, there is little evidence that patients actually want or prefer to take an active role in decision-making, that HCPs are ready or willing to relinquish their traditional role and indeed whether the relinquishing of an instructional or directive orientation is appropriate in all medical encounters (Asimakopoulou, 2007; Newton and Asimakopoulou, 2008).

So does empowerment work in practice? Some research on patient self-care interven-tions adopting the empowerment approach reports a positive impact, in terms of improve-ments in glycaemic control, for example (Anderson et al., 1995; Olivarius et al., 2001), along with improvements in patient confidence in their diabetes knowledge (Adolfsson et al., 2007). However, these studies, while interesting, are not definitive. Olivarius et al. (2001), in a study based in Denmark, concluded tentatively that ‘individualized goals with educational and surveillance support’ may bring risk factors down if followed for at least 6 years. Anderson et al.’s (1995) study was a US-based study, and over three-quarters of the self-selecting participants were college educated; and while Adolfsson found improvements in knowledge and confidence, we know that changes in knowledge are not, in themselves, enough to impact patients’ behaviour (Norris et al., 2002). More recent studies (Adolfsson et al., 2007) have shown improvements in confidence in diabe-tes knowledge, but not in psychosocial (e.g. self-efficacy, satisfaction with daily life) or physiological outcomes (e.g. HbA1c). This ‘discrepancy’ could be because the approach itself is flawed or because, although the intervention was designed to be empowering, HCPs’ skills in facilitating empowerment were deficient. Critics of the use of the concept of empowerment have argued that practice ought to be monitored to ensure that HCPs are indeed being empowering (Asimakopoulou et al., 2010a). The rationale for this insistence is straightforward: to be competent in promoting empowerment, HCPs need to reject the ‘acute care model’ in favour of a patient-centred consultation style. In order to do this, they need not only to acquire new knowledge, skills and attitudes in patient-centredness but also to deal with implementation barriers as and when these arise (Holmstrom et al., 2004). Even as patient-centredness becomes core to modern HCP training, it remains unclear whether the system into which they will move allows them to practise accordingly. In a small qualitative study (n = 16) with Swedish HCPs, Adolfsson et al. (2004) showed that physicians and nurses found it difficult to implement

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empowerment group education in diabetes in practice. Although they believed in the approach theoretically, shifting from the acute care model to one in which they were facilitators proved problematic. The researchers argued that HCPs knew what was expected of them as experts but had difficulty, and needed support, converting to a facili-tation style of consultation (Adolfsson et al., 2004). It is in the light of these findings that we aim to ‘contextualise’ and empower and to explore the underlying structures and assumptions in the arena within which empowerment is practised.

It should be noted that this article focuses on Type 2 diabetes rather than Type 1 dia-betes. The reason for this is that although anecdotally Type 1 diabetes is seen as the more acute or serious condition, Type 2 diabetes is far more prevalent, with approximately 90 per cent of people with a diagnosis of diabetes having Type 2 diabetes (Diabetes UK, 2010), which involves adults who are responsible for their own lives and decisions (as opposed to children with Type 1 who heavily rely on others for help with their diabetes regime).

An exploratory study

The data presented here were from a Diabetes UK–funded project seeking to explore HCPs’ understanding and applications of principles of empowerment in day-to-day clini-cal practice. Frontline diabetes staff across a variety of specialities were recruited from a moderately deprived area in South East England. Efforts were made for a varied sample of diabetes specialities, which included, among others, consultant diabetologists, diabe-tes specialist nurses and podiatrists. Although not an explicit inclusion criterion, all HCPs who agreed to participate had experience with the concept and rhetoric of empow-erment as all had been trained in and reported using principles derived from the DESMOND programme (Varty and Varty, 2006). DESMOND is well known to share the basic principles of the empowerment philosophy, namely, those revolving around patients being supported rather than ‘taught’ in making choices about their diabetes themselves (Davies et al., 2008). A small but appropriate sample (n = 14) of participants were inter-viewed in 60-minute, semi-structured, in-depth telephone interviews (Bourke and Burgman, 2010; Crouch and McKenzie, 2000, 2006; Kai-Cheong Chan and Gillick, 2009).1 Anonymity and confidentiality were maintained throughout in accordance with an agreed ethical protocol. All interviews were transcribed verbatim and analysed the-matically. The results presented here help build a picture of how empowerment was constructed within diabetes care. The interviews started by asking professionals for their definitions of the term and moved on to look at applications of empowerment and to explore the ways in which HCPs encouraged patients to self-manage.

The results of the study

Defining terms

Participants were asked to define empowerment and to talk about whether and how they ‘practised’ empowerment; they were also asked how they would measure or ascertain successful empowerment. It was clear from the responses that the concept of

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empowerment was complex and that there existed no ‘general understanding’ of what it entailed, how it should be done and by what criteria it might be evaluated. Thus,

… the term is very vague … And err err some people may well have adopted it because it is the politically correct thing … (P1:11)

I think empowerment in itself is such a huge word. I mean it can mean many things to many people. (P2:14)

There was, however, general agreement about the fundamental principle underpin-ning empowerment: the idea that it was about educating, imparting knowledge and skills and facilitating patients in developing the tools necessary to ‘successfully manage’ their condition:

I would understand empowerment to be to educate patients, to give them all the information and knowledge at a level that is suitable for them and to understand, and for them to be able to then … to be able to understand why they’re doing things and the reasoning behind it, and some of the targets and values we’re aiming for. (P3:1)

It seems then that empowerment was about giving patients the tools to make informed decisions about their treatment that result in effective self-management. Already there was talk about ‘best possible control’ and an understanding of the ‘targets and values we [namely, HCPs] are aiming for’. The bounded, structured nature of the field in which empowerment was practised started to emerge before empowerment in practice was explored.

Furthermore, there was disagreement and a lack of clarity about each component of the definition. Views on how patients should be, and were, ‘given’ the tools varied from one-to-one information sessions to written information, through group support sessions to structured education programmes, and includes didactic teaching and open-ended facilita-tion. The exact nature of the ‘tools’ varied according to the professional involved and the particular patient, as well as being circumscribed by external factors such as the availabil-ity of funding and resources and of time. There was disagreement about the nature of ‘informed decisions’ and the need to actively encourage patients to make the ‘right’ informed decision. Finally, there was no consensus over the criteria to be met for ‘effec-tive self-management’, which could include meeting biochemical targets, good quality of life, minimal use of diabetes services or any combination of these.

When all of these were taken into consideration, it was apparent that the term, while seen by all respondents as a positive and necessary advance in the care of most people with diabetes, had little objective or measurable credibility beyond the facilitation of a more open, patient-centred approach to care, and even this was a structurally bounded approach. What was also clear was that the ‘empowerment’ offered to patients was not uniform. The nature of the ‘empowerment’ depended on the ‘particular’ health-care per-sonnel involved and their perception of the needs, personality and capacity of the patients to assimilate and understand information. It also depended on the cultural, social, eco-nomic and material resources available to the patient to facilitate ‘empowerment’. An

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exploration of how empowerment was used in practice further demonstrated the bounded nature of the term and biomedical expectations of success.

The agenda

Despite a lack of clarity concerning the concept, the specialists involved in this study were at one in their positive attitude towards empowerment as a practice. This does not mean, however, that they did not have concerns and caveats, and it is worth reiterating that the participants were all ‘empowerment trained’ and expected to be committed to the approach:

This is something I believe in very passionately as you’ve probably noticed. (P10:8)

There was also unanimous agreement that empowerment was especially relevant for patients living with long-term conditions with no known cure where medicine provides symptom control rather than being curative:

The medicine is, in my opinion, is half their story. Medical intervention, or therapeutic intervention, has got only a limited role. In the first place it doesn’t work universally. Wherever it works, even then there is a limited amount or limited benefit that it exerts. The rest has to come by patient understanding of their treatment; why they are taking it, what it is doing, how they can make it work much better for them. (P1:3)

Empowerment was seen as the antidote to apathy and a culture of dependency, a way of ‘nudging’ people to take control of their lives, although it was noted that there could be a conflict with a HCP’s duty to provide best care:

There is always a risk in the name of patient empowerment, in the name of patient choices, in the name of patient wishes that sometimes you may not be doing your role of really, really … I’m not saying that you should force the thing on your patient, but as an affectionate, as a responsible professional it is your duty to, to try to highlight various aspects of their problem. (P1:11)

It seems that empowerment was about more than simply providing information and should incorporate guiding patients in the most appropriate use of that information. Ideas of best care and appropriate use of information hint at an agenda, or structure, behind the professed desire to promote informed choice and the biomedically structured context within which empowerment practices can be seen, prioritising the biomedically legiti-mated cultural and symbolic capital held by HCPs over that of their patients.

This agenda was confirmed by the acknowledgement that judgements needed to be made about the amount of information that patients wanted and were able to assimilate, along with the level at which that information should be pitched:

Everybody’s going to be a bit different, so some people want to know more, want to know the ins and outs, the scientific approach, you know, … and you also get people that … that would just scare them, so I think you need to understand a … a level person is coming to you at as well. (P3:12)

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I think you’ve got to be very careful to recognise where the patient’s individual limitations are and how far they want to take things … (P4:2)

While it is clearly necessary to adjust the information to the needs of each patient, this could lead to HCPs making value judgements about the limitations and needs of each patient and artificially limiting their ability to exercise their empowerment. Therefore, not only was there a hidden agenda relating to making the correct choices, access to the information required to make empowering choices was also controlled by the HCPs, potentially limiting the capital available to non-HCPs within the field.

Making the right choices

The rhetoric of empowerment suggested that patients were helped to find the tools with which they could make informed decisions about the way in which they self-managed their disease. The theory would suggest then that as long as the decision was an informed one, it could legitimately be concordant or discordant with medical advice. In reality, the participants in this study suggested that empowerment was informed choice as long as that choice was concordant:

And therefore there needs to be a some sort of a discussion with the patients and that may come if you try to explain what is the rationale behind it; why you are doing, what you want to achieve it and what are the problems for the patient, because nothing comes without any pain. There are always side effects with medication. There is always a question of monitoring. There is always a question of certain other aspects of lifestyle issues to be addressed. And that may be quite difficult and painful. Err you can’t just change somebody’s behaviour after 30 years or 40 years of its being in practice. So these are all difficult … and means, at times, a lot of confrontation. (P1:5)

We don’t want to dictate to patients, we try to get patients to come round to the answers themselves by discussing it and, you know, giving prompts etc. (P3:11)

… encouraging them to make the decisions rather than you giving them the information … So that’s talking through what they’ve already learnt but getting them to make the decision, but a decision that is based on information that they understand. (P11:4)

Thus, the active persuasion of patients to make the ‘correct’ informed choice was not seen as antipathetic to the ethos of empowerment.

The active persuasion of patients to make the correct informed choices was facilitated by the use of biochemical targets. For many, although not all participants, a key compo-nent of empowerment was to enable patients to meet their biochemical targets, whether generic or individually, through self-management:

Even if you have checked the blood pressure, that it is OK is often not the right thing. Patients should be able to know exactly what is the blood pressure level. Err … that only comes if patients are being empowered. For them there’s a specific level, whatever we have agreed, that they have to achieve. (P1:4)

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They should know in their own numbers, if you like, their own figures and what they should be. (P2:4)

I would understand empowerment to be to educate patients, to give them all the information and knowledge at a level that is suitable for them and to understand, and for them to be able to then … to understand why they’re doing things and the reasoning behind it, and some of the targets and values we’re aiming for. (P3:1)

Again, there did not seem to be awareness of the possible contradiction between a phi-losophy promoting informed choice and the pre-setting of medical parameters within which that informed choice was allowed to take place.

Criteria for successful empowerment

The final stage of the process is to judge whether empowerment has been successful. Participants were asked about the nature and parameters of successful empowerment and how this could be measured. Success was measured by some purely in relation to bio-chemical targets:

They’re doing well because they’re managing their own diabetes. They’re managing it themselves. They’re, possibly they’re engaging in it. They’re erm, you know, their HPMCs aren’t coming back at 11 and 12% all the time and, you know, they’re, they’re coming to their clinic, they’re asking the questions, they’re, you know, keen to, you know, learn possibly, they’re keen to move forward, they’re, you know … I suppose they’re the ones that aren’t giving you the problem, as it were, you know. (P2:13)

Others introduced quality of life to the mix:

It depends how you look at it, whether you’re looking at it from a personal point of view and the impact on a patient generally and it fitting in with their own life and the rest of their family, or you’re looking at numbers and targets and blood sugars … I think the two need to work together, I think ideally we would like everybody to have good HVA1Cs, good blood sugar control and be doing everything, but at the same time you need to be realistic, the patient needs to be happy and they need to fit in with … their own lives. (P3:5-6)

One participant remained true to the philosophy of empowerment:

I wouldn’t put a clinical value on it because it’s so individual per person, you’ve got people that will be happy and symptom free running their blood sugars higher than perhaps I would like but they’ve got the knowledge and the information to make that decision … so putting a clinical marker on it means you are putting yourself on them. (P10:3)

But even here, being symptom free was a criterion for success, so while biochemical ‘targets’ were not necessarily important, success was still defined in biomedical terms. The lack of a clear and consensual understanding of the criteria for successful empower-ment made it impossible to judge the relative success or failure of the empowerment

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project. This is either (a) a flaw in the philosophy or (b) a calculated illusion, allowing empowerment to appear universally applicable to a progressive type of health care that promotes patient choice and self-management, while in fact health professionals retain control through the structure of the field in which empowerment is occurring. Thus, with (b), the responsibility lies with the patient, but the control and power lie with the HCPs or the system.

Empowerment in the ‘Field’ of diabetes

Bourdieu’s (1990, 1999; Bourdieu and Wacquant, 1992) concept of field gives us a framework through which empowerment within diabetes can be contextualised. Using the work of Bourdieu allows us to note the ‘structured space’ within which the processes surrounding self-care are undertaken. This incorporates the biomedical control of the processes and measurements of success within the field of diabetes while acknowledging both capital flows and individual agency. The field refers to a social arena or space, bounded in an experiential context (in this case, a diagnosis of diabetes or the presence of symptoms of diabetes), which ‘calls forth’ the need to respond and attend to the self and/or a given situation (i.e. the need to manage the disease and engage with diabetes HCPs). For Bourdieu, a field is ‘… a relational configuration endowed with specific gravity which imposes on all the objects and agents which enter into it’ (quoted in Adams, 2006: 514). Thus, fields both prompt and orientate certain behaviours from the agents entering them.

By envisaging diabetes as a field with biologically determined parameters, we can explore the ways in which the disease and all it entails impose on all of the objects and agents who find themselves within the field. The parameters of the field are temporal and temporary, in that they are dependent on dynamic and developing biological and bio-medical research into the mechanisms of the disease and the fashioning of therapies to ‘treat’ or ‘cure’ it, even to ‘prevent’ it. In addition, we would suggest that the parameters of the field are permeable, allowing movement in and out of the field for those who may remain unsure of their diagnosis for extended periods of time. These people may experi-ence symptoms and encounter services flexibly until a formal diagnosis is reached. Furthermore, as fields are generated in any circumstances, where practices are per-formed, each is characterised by a structured system of social positions and power rela-tions formed by the interplay and distribution of capital. An exploration of the capital controlled by HCPs and the structures within which empowerment is practised would allow us to understand the ways in which empowerment is used and judged successfully. Bourdieu’s four types of capital are defined in Figure 1.

The structured system within the field of diabetes affects the types of capital that are accumulated and transacted and provides, or denies, legitimation to the forms of capital being used by those within the field. Continuing in this vein, we suggest that the bio-medical nature of the field predetermines the pre-eminence of biomedical knowledge over other forms of knowledge. This systematically advantages HCPs and disadvantages patients and families who finds themselves within the field and have to negotiate their way through it. In this context, social capital, in the form of institutionalised social

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networks, is highly organised and internalised. Patients are socialised into normalising the dominance of biomedicine and thus accept the power asymmetry that this implies. Cultural capital takes the form of the clinical skills, competencies and qualifications held by HCPs, which make them ‘epistemologically privileged’. The cultural capital accumu-lated by HCPs within the field can also be seen in the alignment of the patients’ voice with that of the HCPs. The nature of the cultural capital within the field is such that symbolic capital is accumulated as a by-product of the legitimation of cultural capital. Thus, status and social power are simply by-products of having clinical skills, competen-cies and knowledge within this field.

While patient-centredness is now a component of much HCP training, the medical environment remains heavily influenced by the traditional medical model of care, whereby there is an expectation that patients will take on board and comply with the advice and guidance of the HCPs involved in their care. This is the key structure that still shapes the field of diabetes, whether consciously or unconsciously, as HCPs conform to the environment and philosophy within which they are entrenched. Its influence comes

Figure 1. Bourdieu’s capital.

Capital Characteristics Institutional Form Examples Conversion

Economic Material circumstances. Can mitigate against other forms of capital.

May be institutionalised through the financial system, or welfare state.

Personal: income, wealth Institutional: benefits, grants equipment

Social Formal and informal social links.

May be institutionalised through social networks.

Informal: family, friends.Formal: provided through the institutions of health, social care and education.

Can be converted into economic capital

Cultural Based on socially legitimated knowledge and practices.

May be institutionalised through qualifications and membership of professional bodies.

Educational qualifications, Membership of professional bodies.

Can be converted into economic capital

Symbolic Prestige, status and honour ascribed to significant institutions, groups and social relations.

May be institutionalised through systems which ascribe status.

Peerage, parental authority, seniority within a tribe or family.

Can be converted into economic capital.

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through clearly in the quotations from the HCPs interviewed for our study. Furthermore, in this context, successful management of diabetes would entail the tight control of gly-caemic levels, the adoption of a healthy diet, usually with a weight-loss target, the uptake of regular physical activity and the monitoring of glucose levels, plus further adjustments of behaviour to ensure that such levels are maintained within a medically defined range. This is the structure of the field in which people with diabetes find themselves and within which empowerment is practised. If you add to this the hierarchical nature of the power relations within the field, the symbolic capital (status) and cultural capital (expertise) accumulated by HCPs, this puts them in a position to manipulate or control their patients. Conversely, patients find themselves within a field where they need to develop new forms of capital, understanding the disease process, causes, symptoms and the changes that they are required to make to control the disease.

In addition to the structured nature of the social space in which empowerment exists, the concept of empowerment also has ramifications for agency. It is assumed that HCPs are themselves able, willing and in favour of deserting the traditional medical model, which they have been trained to apply, for the opportunity to work under the empower-ment regimen. However, there is no research in the United Kingdom to date to show that diabetes HCPs believe that patients’ knowledge is in any way ‘equivalent’ to theirs; that they believe that a consultation affirming empowerment ideals is the way forward for good diabetes control; or that they have the skills, aptitude and resources to move into empowering consultations. Professionals’ understandings of and attitudes towards empowerment in practice have been explored (Asimakopoulou et al., 2012; Newton et al., 2012; Scambler et al., 2012). This work suggests that there is little clarity or shared understanding about what empowerment is and what it involves and that there is disa-greement about the degree of freedom that patients should have in making choices. In practice, a range of behaviours were observed, from actively leading patients to the ‘cor-rect’ choice to an acceptance that a patient can make a conscious and informed decision not to make the ‘correct’ choice. There was no consensus on the definition or measure of ‘successful’ empowerment, but biochemical targets were used as the main tool in ascer-taining success. There was talk of giving patients the tools with which to manage their own illnesses, but this ended with an acknowledgement that in practice, patients were coached in how to meet biochemical targets (Scambler et al., 2012). Patient choice and control turn to disease management and biochemical symptom control.

The broad utility of a Bourdieusian frame

Our remit here has been limited. It has not been possible, for example, to extend the use of Bourdieu’s theories to incorporate wider factors – ranging from the role of corporate business in marketing foods and goods that may help induce diabetes to issues of state and health-care regulation and delivery – that play on the specific field of diabetes care and management that we have examined. We would maintain, however, that the ‘Bourdieusian frame’, as we have defined and used it here, is of relevance to many kin-dred fields in which HCPs and patients meet around treatment and care in relation to long-term conditions.

A Bourdieusian approach, we suggest, affords access to the mechanisms whereby empowerment appears simultaneously to (a) promote patient choice and self-management

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and (b) maintain the control and power of the HCPs. The cultural capital that HCPs derive from their clinical skill set allows them the symbolic capital to define who ‘the empow-ered’ are, usually as patients/people who are able to meet biomedical targets and be ‘clini-cally orientated’ like HCPs (as this is the only way to ‘successfully manage’ an illness and make ‘the right choice’ in relation to self-management decisions). The voice of medicine prevails over the voice of the lifeworld. As the data presented earlier illustrate, adhering to the medical model is, it seems, the only way to be a ‘self-determined individual’, not ‘passive and dependent’ – a strong component of wider cultural capital. Thus, it is in the patients’ interests to comply. This ties in with Bourdieu’s notion of ‘illusio’, where he sug-gests that an individual believes and internalises the rules of the game in a field, identify-ing and assessing self and others in these terms. In this field, the rules are biomedical and involve active compliance and concordance with the measures used to dictate success or failure. The patients are complacent in their subjugation. Within this framework, patients who actively resist attempts to empower, by refusing to self-manage, or refusing to self-manage in the right way, may still be regarded as ‘empowered’ as they are making a choice, albeit the ‘wrong’ one.

It appears then that empowerment started out as a policy development with the explicit aim of giving people with long-term conditions, such as diabetes, the tools with which to self-manage their care (DofH, 2004). Initially, this was a three-tiered approach incorpo-rating (a) professional care for high-risk patients, (b) shared-decision making for those in the middle and (c) self-management for the majority of patients deemed low-risk (Bury, 2010). In practice, this would seem more inline with a patient-centred approach than what is now projected as empowerment within diabetes care. In diabetes care, empower-ment has been defined as ‘[a] process whereby patients have the knowledge, skills, atti-tudes and self-awareness necessary to influence their own behaviour and that of others in order to improve the quality of their lives’ (Funnell et al., 1991: 38). The authors go on to emphasise the importance of patient choice and awareness of the consequences of the choices that they make. On the face of it, this definition lacks the subtlety of the Kaiser approach, with its acknowledgement that empowerment resulting in self-management may not be a suitable or appropriate option for all patients. In practice, empowerment occurring within the field of diabetes bears little resemblance to the original aims of the Kaiser approach. The choices made by patients are controlled by the HCPs who provide them with the tools to make those choices. HCPs decide what empowerment means for each individual patient and how much and what type of information each patient needs. They also facilitate patients in using the tools in an appropriate way, and they decide both what is appropriate and the criteria by which the outcomes should be judged as successful – thus determining the currency of each form of capital. Within this field, the rules are determined and refereed by HCPs, although responsibility for the result lies with the patients either, actively, through their successes or failures to self-manage or, passively, through their inability to ‘be’ managed.

Conclusion

The debate around empowerment and self-management illustrates the tension between policy initiatives and the lived experience associated with long-term conditions. Evidence suggests that these programmes are less effective than was hoped in managing long-term

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conditions (Newbould et al., 2006; Newman et al., 2004) and that they have not reduced the demand for health services. This brings into question continuing state sanctioning and support for empowerment and self-management programmes. Building on his cate-gorisation of an ideological shift to patient-centred rhetoric as a means of disguising the failure of biomedicine in dealing with long-term conditions, Bury (2010) suggests that the rhetoric has changed. He illustrates how terms and concepts that were initially used to challenge the state-sponsored dominance of biomedicine have been colonised by the very system they sought to challenge: ‘where once the “new age” rhetoric of personal growth, autonomy, empowerment and the like were used by social movements to chal-lenge state controlled bureaucratic structures and systems, today they have become part and parcel of state activity itself’ (Bury, 2010: 176). He goes on to suggest that this kind of rhetoric can be seen as a way of placing the patient at the centre of care or as a way of glossing over the complexities of living with conditions of this kind over an extended period of time and the very real need for quality health care.

We would go further and suggest that the promotion of self-management and empow-erment agendas conceals a deeper agenda. By promoting the idea that patients are in control and make choices over their care which affect the likelihood of achieving symp-tom control (self-management), while maintaining control over the mechanisms through which the ‘success’ of this self-management is measured, the power of the patient choice/shared decision-making/empowerment agenda is neutralised. Disability theorists focus on the oppression of people with disabilities living within a social environment organ-ised by and for non-disabled people who conform to norms of bodily functioning. The same can be said for people with diabetes living in a world with routines and dietary and behavioural norms developed for those living without diabetes. In this context, empow-erment might be seen as a way for people with diabetes to take control of their lives and their disease. Empowerment cannot be used as a way to resist those oppressive processes of normalisation associated with biomedicine, however, if the very measures used to judge the success or failure of empowerment are biomedical. Indeed, this kind of empow-erment looks very much like disempowerment.

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Note

1. Sample breakdown: efforts were made for a representative sample of diabetes specialities including a consultant (n = 1), nurse specialists (n = 11), a dietician (n = 1) and a podiatrist (n = 1). Participation was voluntary.

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Author biographies

Sasha Scambler is a Sociologist based at King’s College London with an interest in health, focusing on long term disabling conditions, loneliness and social isolation, inequality in all its various forms and social theory. She is Co-Editor of the journal Social Science and Dentistry and a contributing editor on the British Sociological Association affiliated Cost of Living Blog.

Paul Newton is a Research Fellow, and Lead for the Long Term Conditions Research Cluster in the Centre for Positive Ageing, at the University of Greenwich. His research relates mainly to the management of chronic conditions and applying social theory approaches to the study of chronic and disabling conditions.

Koula Asimakopoulou is a Health Psychologist working at King’s College London. She is inter-ested in behaviour change and people’s attempts to follow through recommendations from health care professionals. She is particularly keen on exploring the concepts of patient empowerment and patient-centred care in chronic illness and dental settings, with a particular emphasis on how such concepts can be applied in practice in clinical settings.

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