Introduction

The perspectives of older people on dignity in care have been largely overlooked in British policies, and the tendency has been to look at ways in which care providers should ‘deliver dignity’ by reference to agreed standards. For example, the Dignity Challenge developed in 2006 identified 10 dignity tests against which services could be evaluated (Cass et al, 2009). In this project, the research team took the view that a better understanding of dignity in later life was needed, which was informed by the experiences of older people, including, but not limited to, those with experiences as service users.

Four questions shaped the research:

• 1. What preparations do older adults who are facing death at a near but uncertain time make for the process of dying and death?

• 2. What accounts are given about dignity in daily life by older adults during this phase in their life?

• 3. What resources are available to these older adults to draw on?

• 4. What factors are perceived to support or undermine a sense of dignity?

Dignity has both personal and social meanings, and the two are closely interrelated. The theoretical model developed by Nordenfelt (2004) was a valuable starting point for this project, as it takes both into account. It proposes four ‘varieties’ of dignity. First, the dignity of merit refers to the high rank of individuals because of the social role they occupy (the historical meaning of dignity) as well as to dignity earned through socially valued achievements. The dignity of moral stature concerns individual conduct and is linked to self-respect, which is shaped by prevalent cultural values, giving it a social as well as personal meaning. Importantly, this type of dignity also draws attention to the conduct of staff in care services and the impact of this on their dignity and moral stature. The third variety – the dignity of identity – is as Nordenfelt expressed it, ‘the dignity that we attach to ourselves as integrated and autonomous persons’ (2009, p 33). It is evidently challenged in old age by failing health and the loss of capacity for self-care. The dignity of identity also has social as well as personal meaning, exemplified in the institutionalisation of older people and the associated loss of individual identity. The fourth of Nordenfelt's varieties is the dignity of being human.

Introduction

At the heart of the regulatory enterprise is the intention to control the behaviour of actors to achieve a variety of economic objectives and social objectives in the public interest. This chapter examines the current regulatory regimes and practices in the health system in India, using the trust/control duality as an analytical frame. In doing so, it critically reflects on the stewardship and governance of the health system, exposing the limits and fragilities of the current regulatory approach to controlling health system actors’ behaviours and practices. Evidence and insights from this analysis are used to depict the nature of trust relations and regulation in the health system, and the problems therein, and to explain why they take that shape. The final part of the chapter outlines possible strategies for the effective stewardship and governance of health systems, and concludes with the identification of key questions for further research.

Rationales for regulation

Regulation as an intervention is usually the prerogative of governments. While politically, governments may have many possible motives behind regulating or not, on a purely technical level, the rationale behind regulation as an intervention is the pursuit of the public interest. Two broad rationales are identified for regulation in the health care context. The first major rationale is that health care markets are imperfect markets and are prone to a range of market failures that require control and intervention to protect the public interest; and also that the health care market is an imperfect market with many public goods, merit goods and private goods with positive and negative externalities, all requiring some form of intervention to promote the public interest. The second major rationale locates regulation prior to, and not in response to, market failures. In this rationale, regulation is seen as a method for organising social relations as a matter of right and as an expression of and a means to furthering social solidarity.

The market failure and imperfect markets rationale for regulation addresses certain unique properties of the health care market.

The need to delegate certain responsibilities to others and a correspondingreliance upon these others is a basic feature of the social, economic andpolitical worlds. Whether we are depending upon a close friend, tradingbased on certain expectations or casting a vote for a particular candidate,notions of trust are vital in facilitating this process of delegation andthe peace of mind we have in doing so. Lately, both academics and the massmedia have been concerned with the apparent difficulty in trusting withinlate-modern society and the implications of this threatened or‘declining’ trust for social capital, economic trade andpolitical authority. At the centre of these concerns is the suggestion thattrust is something both vital and endangered.

The complex manifestations of trust within political systems, or financialmarkets, are well beyond the scope of this study; instead, this book seeksto shed light on trust within the social context of healthcare. Nonetheless,while trust relations are in some senses very much context-specific, anexamination of trust within one case of delegation can surely be instructivefor understandings of how trust functions in other settings. In particular,we hope that by examining trust where it is particularly vital, andparticularly endangered, the analysis expressed in this volume may saysomething about trust that is pertinent beyond the delegation of care forpeople experiencing serious mental health problems. Of course, we also seekto make a contribution to comprehension of the nature of trust, the factorsbehind it and the ramifications of its presence or absence in this importanthealthcare and social policy setting.

People experiencing psychosis do not necessarily choose to have their caredelegated to mental health professionals themselves, and yet in many sensesthey may trust (or distrust, or mistrust) nevertheless. This issue of trustand its relation to (free) choice, as developed in Chapter Four, isimportant within a number of different environments (social, economic andpolitical).

The study of trust presented in this book is predominantly theoretical innature, though our analyses of the concept are nevertheless grounded in, andillustrated through, qualitative data collected in our research withincommunity-based services that deliver healthcare for people experiencingserious mental health problems – especially those with diagnoses ofpsychosis – in Southern England. The empirical research that informsthe theoretical frameworks we develop not only serves to enable more robust,empirically relevant conceptualisations, but also allows us to consider therelevance of trust where it is most vital and yet potentially mostproblematic – amidst especially heightened levels of vulnerabilityand uncertainty. Thus, our research in these settings was in part motivatedby the potential utility of emerging insights for mental health services,but furthermore because this setting represents a crucibleof conditions pertinent to informing our understandings of the concept oftrust. Correspondingly, this book is intended as both an extension of socialtheories of trust, while simultaneously offering more practical insightsinto the relevance and functioning of trust within mental healthcare andother services seeking to meet the needs of vulnerable people.

Following understandings of theory development as an extension out of carefulexploration of cases (Burawoy, 1998), and in relating the micro to the macrothrough ‘forensic analysis’ (Inglis, 2010), our account oftrust takes place at the level of social theory, pertaining to moregenerally occurring social processes, yet this analysis is very muchinformed through the ‘clues, episodes and events’ of amicro-investigation of social relations in a particular context. As touchedupon already, and as we will go on to argue later in this Introduction andin following chapters, there are many features of the social experiences andrelations visible in our data that render this research context pertinent tounderstandings of trust in late-modern societies at the more general andeven macro-level. In this sense, our presentation of trust is very relevantto considerations of broader dynamics occurring across many late-modernwelfare states in the global North.

Late-modernity and the illumination of uncertainties

The concept of late-modernity that is being invoked here isone pertaining chiefly to ‘crisis’. While Habermas (1976: 1)makes this connection with particular regard to political institutions,economic and welfare management, and legitimacy, the‘lateness’ or destabilising of modernity can be conceptualisedas a much broader phenomenon.

Chapter Two analysed various ways in which service users developed trust inspite of general public perceptions, not to mention significant personalexperiences, which might have warded against such positive expectations.Many of the social contexts and professional relations described byparticipants suggested positive grounds for trust, yet histories of negativeoutcomes combined with the multiple uncertainties described towards the endof Chapter One (regarding the possibility and durability of recovery, theeffectiveness of interventions, and the professionals’ embeddingwithin a risk-prioritised service) point towards an apparentunknowableness associated with mental healthcare or,indeed, healthcare in general (Titmuss, 2004). As a recent study makesclear, inherent to healthcare are uncertainties pertaining to the range ofpossible outcomes, more positive or negative in their nature: ‘At itsbest, healthcare will be a testimony to our capacity to be interdependent.At its worst, it will mistreat, maim and kill us’ (Pilgrim et al,2011: 59). Acting within positive expectations for the future amidst suchmanifold uncertainties – Titmuss (2004: 173) lists ‘thirteencharacteristics [which] are indicative of the many subtle aspects ofuncertainty and unpredictability which pervade modern medical caresystems’ – would appear to require a ‘suspension ofbelief ‘ or ‘leap of faith’ (Möllering, 2001),which transcends rational thought or consideration.

Preceding chapters have touched upon at least three features of trust thatwould prima facie seem to underline this‘less-than-rational’ status (Williamson, 1993) – orwhat Zinn (2008a) refers to as trust's position ‘inbetween’ the rational and non-rational. First, the way service users(and, indeed, professionals) focused particularly on the‘presentation of self ‘ – or facework – forappraising the trustworthiness of another would seem to be a highlytentative, subjectively constructed and far from robust means of buildingreliable knowledge about another. Recent debacles within the English NHSunderline the ‘dark side’ of trust (Davies and Mannion, 2000)– where a highly esteemed family doctor was able to kill hundreds ofpatients or where a prestigious regional centre for surgery had anabnormally high surgical mortality rate for infants (Pilgrim et al, 2011:131–45). Impressions, not least adeptly managed facework, can beutterly misleading, and, therefore, the gap between perceptions (trust) andsubstance (trustworthiness) becomes a problematic one (O’Neill,2002).

Methods

A phenomenological approach as a ‘sensitising’framework

The analytical frameworks developed in this book were all useful informulating an array of empirical markers pertaining to the existence,nature and/or limits of trust. More particularly, we were especiallyattentive to various modes by which trust was linked across differentdimensions of healthcare services, partially building on an initialframework set out by Gilson and colleagues (2005). Trust has been portrayedin this study as dynamic and contingent. Accordingly, changes in trustlevels over time and features associated with this (those that were held tolead to changes in trust, as well as features associated with the resultanteffects of changes in trust) received particular attention within theanalysis.

As articulated in Chapter One, trust – as a construction ofexpectations – is very much dependent on how attitudes and behavioursare interpreted and then inferred to indicate intentions ofaction – regarding trustees’ interests and embeddedness withinnormative structures (Möllering, 2005). These features of trust as aprocess of building knowledge from an array of experiential sourcesindicated the utility of a phenomenological approach as a‘sensitising’ framework (Hammersley and Atkinson, 2007), whichinformed both the format of interviews and the coding of data (see more onphenomenology as an approach to trust in Chapter One).

In this way, the difficulty of identifying and coding the potentiallynebulous concept of trust was overcome. A focus on the interpretiveexperiences of actors and the way these were drawn upon when constructingfuture expectations was recognised as especially salient when codingunderstandings of trust – as an ongoing, embodied, conditional andnegotiated process of sense-making and expectation construction (Smith andOsborn, 2003). When analysing the data, the informants’ use ofideal-types (Schutz, 1972) was also apparent and noted – for example,generalised views of the quality of mental health services, the motives ofpsychiatrists or the likely concordance of certain service users. Thisideal-typical knowledge formed important building blocks when constructingfuture expectations (Brown, 2009a).

Design

The dynamics of different trust relations were explored through a single casestudy involving informal interviews with service users, professionals andmanagers (n = 23) working in three services designed tomeet the needs of people experiencing psychosis – all within one NHSTrust (local health authority) in Southern England.

Dependence, choice and trust

A number of questions have appeared, more or less explicitly, within thepreceding chapters pertaining to a tension between processes of trustformation and the extent of choice involved within these. One example ofthis was in Chapter Three where we followed Barbalet in noting a‘forced option’ (Barbalet, 2009: 372) aspect to trust, as wasmade evident in comments by participants such as ‘You have to [trust]in some ways’. In Chapter One, we suggested that some degree ofchoice was intrinsic to trust (following Luhmann, 1988) and that this,therefore, presents us with an apparent contradiction. A number of questionsthus emerge as to how we deal with the limited agency involved in trust and,where this is apparent, whether we are being accurate in referring totrust.

These concerns are latent within a number of empirical studies into thenature of trust, not least within healthcare contexts, though few studieshave set out to grapple with these difficult issues. One noteworthyexception to this is a paper by Meyer and Ward (2009), which rendersexplicit a number of the tensions touched upon here. At the centre of theseauthors’ concerns, and seemingly of this issue, is the notion ofdependence. High levels of dependence limit choice and, thus, make trustless relevant, leading Meyer and Ward to argue for a clearer distinctionbetween when researchers are referring to trust and when – in theabsence of choice – they are referring in fact to dependence.

While this would seem prima facie a very suitable,Luhmannian answer to this conceptual problem, there are many aspects oftrust that we have visited in the previous chapters that suggest things arenot quite so straightforward. The first concern with this solution is thatdependence, far from being separate from trust, is in many senses apre-condition of trust as a result of vulnerability. As was also establishedin Chapter One, actors only need to trust when they are vulnerable. Thisposition of vulnerability makes salient certain power dimensions that renderthe vulnerable more or less inevitably dependent on certain other actors.For example, the social experience of illness within modern societies meansthat those experiencing morbidity are normatively oriented towards dependingon those apparently able to understand, diagnose and alleviate illness– typically, healthcare experts.

This chapter will develop a theoretical framework for understanding how trustin the context of psychosis services is possible – in spite of theemphasis upon more negative characteristics of mental heath institutionswithin a range of narratives in public sphere discussions and, moreover,within the experiences of many service users. As touched upon in ChapterOne, there are a range of potentially significant obstacles to trust in thecontext of psychosis services and it has been argued that trust, thoughnecessary, would appear prima facie unlikely (Brown et al,2009: 453). First of all, we survey a range of sources of knowledge aboutservices – and the institution of psychiatry– which may be drawn upon by service users in contexts ofvulnerability and uncertainty, and which accordingly shape the likelihood ofprocesses of trust, distrust or mistrust. The central section of the chapterwill then, drawing on Schutzian phenomenology and a typology of knowledgeformats outlined by Habermas (1971), develop a framework for understandingthe varying significance of different types of knowledge for trust. Thiswill be useful in understanding why, despite negative institutionalperceptions and problematic personal experiences, a number of participantsin our study described their experiences of relationships within services interms of high levels of trust.

Three sources of negative institutional conceptions

Psychiatry: history and media portrayals

In a number of senses, ‘psychiatry’ is an overly narrow headingfor this subsection as, of course, modern mental health services includesocial workers, community psychiatric nurses (CPNs) and psychologists(alongside various other professions allied to medicine such as occupationaltherapy) and are thus profoundly multidisciplinary. And yet, althoughdoctors make up only a small proportion of the professionals with whomservice users are in contact, their influence, profile and history,nonetheless, looms large within general perceptions of the nature of carefor people experiencing severe mental health problems, as well as within anumber of connotations associated with labels such as schizophrenia andbipolar. The power of the psychiatrist in diagnosing and sectioning andtheir central role in prescribing decisions renders their presence andreputation as fundamental for how mental health services are viewed withinthe public sphere.

General public conceptions of mental health services and their portrayal inthe public sphere are decidedly, albeit not solely, psychiatry-oriented.

Thus far, much attention has been paid to the contexts of vulnerability anduncertainty that make trust relevant and salient for service users. We havebriefly noted in earlier chapters that mental health professionals deal withmanifold uncertainties, though the ways in which these uncertainties areintertwined with high levels of vulnerability have not been discussed in anysignificant depth up to this point. This chapter begins by noting howprofessionals respond to vulnerability and how these responses are shaped byinstitutional and policy contexts. We assess the format of risk approachesthat aims at control and explore the ‘trust–controldialectic’ (Gallivan and Depledge, 2003; Brown, 2008a) that resultswithin mental health contexts. This provides one useful basis forconsidering the interrelatedness of different levels of trust:manager–professional, inter-professional andprofessional–service user. Drawing on our data, we go on to considerthe appearance of virtuous or vicious circles of trust, and the way thesecyclical patterns are rooted in institutional policy formats on the onehand, and the social contexts of service users on the other. The chapterwill close with some initial policy recommendations, drawing on some of thenotions of transaction cost economics touched upon in earlier chapters,which will lay the basis for certain discussions that will be pursued in thefinal chapter of this book.

Professionals in the midst of vulnerability

The preceding chapter explored various features of the responses of serviceusers, in many cases leaning towards trust, which were understood withinsocial contexts of vulnerability and the needs of service users to cope withthis. Mental health service users, especially those with diagnoses ofpsychosis, are often characterised as a vulnerable group, but less attentionis paid to the vulnerability experienced by professionals. Earlier chaptersreferred to the close linkages between risk and blame (following Douglas,1992) and, moreover, the way risk has become a defining concept of recentmental health policy in England (Pilgrim, 2007). In contrast to neighbouringpolicy contexts, Scotland being one notable example (Darjee and Crichton,2004), significant emphasis has been especially placed upon certain forms ofrisk management within English mental health services (Langan, 2010).

The very nature of risk, especially in terms of its application within modernorganisation contexts, is to apportion blame (Douglas, 1992), often onto theshoulders of experts (Luhmann, 1993). Risk was a significant theme inprofessionals’ accounts of their day-to-day work.

Risk, vulnerability and uncertainty

In the Introduction, we outlined a number of features of late-modernsocieties – uncertainty, complexity and abstractness in particular– which may serve to heighten experiences of anxiety andvulnerability (Wilkinson, 2001) and, moreover, exacerbate challenges toindividual considerations of action and decision-making (Beck, 1992). Wenoted the existence of various processes, connected to the individualisationof society, by which the futures of individual actors are seemingly morecontingent on their own decisions than was previously the case (egpension-planning; see Jones et al, 2010), but where the range of informationand expert support is also perceived as more contested, constructed andpotentially fallible than before. The existence of decision-relatedcontingencies amidst uncertainty points towards the salience ofrisk within this context – both for individualsas they seek to make decisions in the everyday (Zinn, 2008a) and forpolicymakers as they attempt to manage institutions in a legitimate,effective and economically viable manner (Kemshall, 2002).

Risk involves the contingency of future outcomes – often referring tonegative outcomes, though this is not necessarily so – in relation tothe probability that a particular outcome will result aswell as the magnitude of its impact. In this sense, risk isa lens for considering eventualities within an uncertain future and a modeof planning or acting in relation to these. In its narrowest sense,considerations of risk are decidedly calculative ones, involving therefinement of technologies that seek to gauge the probability of certainevents (a patient failing to cooperate with psychiatric treatment) and themagnitude of the consequences of this (for the patient and others in thecontext). However, a number of social scientists, for example Mary Douglas(1992), alongside academics working within mental health services (egSzmukler, 2003), emphasise various broader considerations that are inherentto how we think about risk. For when we consider future outcomes, as theseare attributed to individual decisions (Luhmann, 1993), we are not justthinking mathematically. Rather we are attaching values tothe perceived outcomes, and this process renders risk a thoroughly politicaland moral phenomenon as much as a calculative one (Douglas, 1992; Szmukler,2003).

Yet, while risk is never, and can never be, purelycalculative, it does nonetheless involve an approach to the future thatinvokes probabilistic thinking and an assessment of action in the light ofthis.

This final chapter has two main aims. First, to summarise the major themesthat emerged from the theoretical and empirical analysis and discuss theirimplications for furthering the understanding of the nature and salience oftrust relations in the context of mental healthcare and beyond. This willinvolve a summary of the key conclusions that emerge from the differentelements of the analysis. The second aim is to consider the policyimplications that flow from the empirical findings and the theoreticalframework. While policy notions are applied throughout this book and formthe very context within which theorisations are developed, this concludingchapter will more explicitly draw out a number of considerations andchallenges for policy and practice, based on the findings of the research.More specifically, it will explore theoretical propositions that servicesorganised around concerns of trust will: be more likely to be approached bythose in need; enable more complete and open ‘disclosure’between service users and professionals (Dew et al, 2007); and facilitategreater levels of cooperation with agreed treatment plans. Key questions forfurther research will also be identified where relevant.

Overview of key themes

The underlying purpose of our research was to explore the nature of trust inthis context of heightened vulnerability and uncertainty. Hence, the focushere is on the clinical setting of the provision of mental health serviceswhere there is not only uncertainty about diagnostic labels (many of whichare still associated with both felt and enacted stigma) and treatmentoutcomes, but where the nature of the trusting relationship may be integralto the modes of treatment and, therefore, fundamental to therapeuticoutcomes. Certainly, trust is not something immediately identifiable, but,rather, tends to be taken for granted and routinised. Thus, its existencemay not come to the fore until it is challenged and where there is at leastthe threat of a breakdown in trust between service users and clinicians, orbetween clinicians and their managers.

A study of trust in action, therefore, needed to focus on situations wheretrust is fragile, such as in the context of mental healthcare, which wasbelieved to be a ‘low-trust’ setting (Helene Hem et al, 2008;Pilgrim et al, 2011).

Introduction

Over the past 30 years, the discourse of work stress has become one of the key frames of reference by which people make sense of the problems they encounter in their working lives (Wainwright and Calnan, 2002). In 2007/08, the UK Labour Force Survey found that 17% of workers reported that their job was very or extremely stressful; a third had discussed work stress with their line manager; 442,000 workers felt that stress was making them ill; and work stress accounted for 13.5 million lost working days (ONS, 2009). As well as charting the extent of the ‘epidemic’, this self-reported data also reveal that notions of work stress have moved from the sphere of academic debate into the public domain, providing a web of meaning through which workers can make sense of their experiences at work.

The discourse of work stress may be on everyone's lips, but we wish to argue that it is about to fall. The academic theories of work stress that underpin the popular discourse are riven with conceptual problems and methodological difficulties, and policymakers and employers are increasingly turning to the currently rather amorphous concept of ‘wellbeing’ to provide an alternative means of understanding and addressing the relationship between work and health. The aim of this chapter is to elucidate the fall of work stress and the rise of wellbeing, and to argue for a conception of wellbeing that is theoretically grounded in the social determinants of illness behaviour and resilience.

The popular discourse of work stress

During the second half of the 20th century, ideas about work stress crossed the boundary between science and popular discourse. Today these notions are so deeply embedded in the popular imagination that they appear naturalised and universal, so much so that it is difficult to imagine a time before work stress, or a place where it might not be found. In this sense, we can speak of a popular discourse of work stress – a set of shared assumptions, norms, expectations and ways of being in the world that collectively provide a web of meaning through which adverse experiences at work can be interpreted and made sense of.