From Health Behaviours to Health Practices E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Geisteswissenschaft
• Serie: Sociology of Health and Illness Monographs
• Sprache: Englisch

Seitenzahl: 456

Veröffentlichungsjahr: 2014

Beschreibung

A wide range of international contributions draw on theoretical and empirical sources to explore whether alternatives exist to both conceptualise and conduct research into what people do and don’t do, in relation to their health and experiences of illness.

• Presents a collection of international contributions that complement, as well as critique, dominant conceptualisations of health behaviour
• Includes a wide range of both theoretical perspectives and empirical cases
• Reasserts the unique contribution social sciences can make to health research
• Challenges assumptions about the usefulness of the concept of health behaviour
• A timely publication given the rise of chronic and lifestyle diseases and the resulting changes in global health agendas

Leseprobe

Sociology of Health and Illness Monograph Series

Edited by Professor Ian Rees Jones

Cardiff School of Social Sciences

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46 Park Place

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Current titles

From Health Behaviours to Health Practices: Critical Perspectives

edited by

Simon Cohn

Pandemics and Emerging Infectious Diseases: The Sociological Agenda

edited by

Robert Dingwall, Lily M Hoffman and Karen Staniland

The Sociology of Medical Screening: Critical Perspectives, New Directions (2012)

edited by

Natalie Armstrong and Helen Eborall

Body Work in Health and Social Care: Critical Themes, New Agendas (2011)

edited by

Julia Twigg, Carol Wolkowitz, Rachel Lara Cohen and Sarah Nettleton

Technogenarians: Studying Health and Illness Through an Ageing, Science, and Technology Lens (2010)

edited by

Kelly Joyce and Meika Loe

Communication in Healthcare Settings: Policy, Participation and New Technologies (2009)

edited by

Alison Pilnick, Jon Hindmarsh and Virginia Teas Gill

Pharmaceuticals and Society: Critical Discourses and Debates (2009)

edited by

Simon J. Williams, Jonathan Gabe and Peter Davis

Ethnicity, Health and Health Care: Understanding Diversity, Tackling Disadvantage (2008)

edited by

Waqar I. U. Ahmad and Hannah Bradby

The View From Here: Bioethics and the Social Sciences (2007)

edited by

Raymond de Vries, Leigh Turner, Kristina Orfali and Charles Bosk

The Social Organisation of Healthcare Work (2006)

edited by

Davina Allen and Alison Pilnick

Social Movements in Health (2005)

edited by

Phil Brown and Stephen Zavestoski

Health and the Media (2004)

edited by

Clive Seale

Partners in Health, Partners in Crime: Exploring the boundaries of criminology and sociology of health and illness (2003)

edited by

Stefan Timmermans and Jonathan Gabe

Rationing: Constructed Realities and Professional Practices (2002)

edited by

David Hughes and Donald Light

Rethinking the Sociology of Mental Health (2000)

edited by

Joan Busfield

Sociological Perspectives on the New Genetics (1999)

edited by

Peter Conrad and Jonathan Gabe

The Sociology of Health Inequalities (1998)

edited by

Mel Bartley, David Blane and George Davey Smith

The Sociology of Medical Science (1997)

edited by

Mary Ann Elston

Health and the Sociology of Emotion (1996)

edited by

Veronica James and Jonathan Gabe

Medicine, Health and Risk (1995)

edited by

Jonathan Gabe

This edition first published 2014

Originally published as Volume 36, Issue 2 of The Sociology of Health & Illness

Chapters © 2014 The Authors.

Book Compilation © 2014 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Blackwell Publishing was acquired by John Wiley & Sons in February 2007. Blackwell's publishing program has been merged with Wiley's global Scientific, Technical, and Medical business to form Wiley-Blackwell.

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Library of Congress Cataloging-in-Publication Data

From health behaviours to health practices : critical perspectives / edited by Simon Cohn.

            p. ; cm.

    “Originally published as Sociology of health & illness ; v. 36, issue 2.”

    Includes bibliographical references and index.

        ISBN 978-1-118-89839-0 (paperback)

    I.  Cohn, Simon, editor.    II.  Sociology of health & illness.

    [DNLM:     1.  Health Behavior–Collected Works.    2.  Sociology, Medical–Collected Works. W 85]

    RA418

    362.1–dc23

                                                                    2014018415

A catalogue record for this book is available from the British Library.

Notes on Contributors

Thomas Abel    Department of Social and Preventive Medicine, University of Bern, Switzerland

John Anderson    Centre for Addictions Research of British Columbia, University of Victoria, Canada

David Armstrong    Department of Primary Care and Public Health Sciences, King’s College London, UK

Fran Baum    Southgate Institute for Health, Society & Equity, Flinders University, South Australia

Cecilia Benoit    Centre for Addictions Research of British Columbia and Department of Sociology, University of Victoria, Canada

Peter Bower    Health Sciences, Manchester University, UK

Patrick John Burnett    Department of Sociology, University of British Columbia, Canada

Sinead Charbonneau    Centre for Addictions Research of British Columbia, University of Victoria, Canada

Simon Cohn    London School of Hygiene & Tropical Medicine, London, UK

Carol Emslie    Institute for Applied Health Research, School of Health & Life Sciences, Glasgow Caledonian University, Scotland

Matthew Fisher    Southgate Institute for Health, Society & Equity, Flinders University, South Australia

Katherine L. Frohlich    Department of Social and Preventive Medicine, School of Public Health and IRSPUM, Université de Montréal, Canada

Judith Green    Department of Health Services Research and Policy, London School of Hygiene & Tropical Medicine, London, UK

Helga Hallgrimsdottir    Department of Sociology, University of Victoria, Canada

UK

Christine Horrocks    Department of Psychology, Manchester Metropolitan University, UK

Kate Hunt    Medical Research Council/Chief Scientist Office, Social and Public Health Sciences Unit, Glasgow University, Scotland

Sally Johnson    Division of Psychology, University of Bradford, UK

Anne Kennedy    Health Sciences, Manchester University, UK

Antonia C. Lyons    School of Psychology, Massey University, New Zealand

Karen MacKinnon    School of Nursing, University of Victoria, Canada

Lenora Marcellus    School of Nursing, University of Victoria, Canada

Annemarie Mol    Amsterdam Institute for Social Science Research, University of Amsterdam, The Netherlands

Andrew Morden    Arthritis Research UK Primary Care Centre, Keele University, UK

Sarah Nettleton    Department of Sociology, University of York, York, UK

Bie Nio Ong    Arthritis Research UK Primary Care Centre, Keele University, UK

Rachel Phillips    Centre for Addictions Research of British Columbia, University of Victoria, Canada

Jane C. Richardson    Arthritis Research UK Primary Care Centre, Keele University, UK

Anne Rogers    Health Sciences, Manchester University, UK

Tom Sanders    Arthritis Research UK Primary Care Centre, Keele University, UK

Erica van der Sijpt    Amsterdam Institute for Social Science Research, University of Amsterdam, The Netherlands

Sudeh Cheraghi-Sohi    Arthritis Research UK Primary Care Centre, Keele University, UK

Camille Stengel    School of Social Policy, Sociology and Social Research, University of Kent, UK

Fiona Stevenson    Primary Care and Population Sciences, Royal Free and University College London Medical School, UK

Gerry Veenstra    Department of Sociology, University of British Columbia, Canada

Else Vogel    Amsterdam Institute of Social Science Research, University of Amsterdam, The Netherlands

Kate Weiner    Department of Sociological Studies, University of Sheffield, UK

Catherine M. Will    Department of Sociology, University of Sussex, UK

Pilar Zazueta    Division of Medicine, University of Victoria, Canada

1From Health Behaviours to Health Practices: An Introduction

Simon Cohn

Changes in demographics and the widespread decline of communicable disease in both Western and non-Western populations has resulted in the rise of so-called chronic illnesses, and in particular, ‘lifestyle conditions’. This has led health professionals to turn their gaze from eradicating external agents of disease to altering a wide range of interacting factors identified as causing, or having the potential to cause, ill health. As a result, the idea that smoking, diet, alcohol consumption and physical activity should now be a central focus for intervention has become an established and uncontested position not only in health research but among policymakers, the media and the public more generally.

Derived from health psychology, the concept of health behaviour underpins many of these developments and has led to the generation of new typologies and fields of academic expertise. The assumption that there are easily identifiable and observable forms of health behaviour has almost universally been adopted by those involved in (and funded to do) healthcare research. Yet a great wave of research over the last two decades attempting to develop techniques and evidence of behavioural change has proved to have surprisingly limited success. Usually, explanations of negative findings focus on the nature of the intervention, its theoretical underpinnings, problems with its delivery or the outcome measures used. Very rarely, if ever, is the validity or usefulness of the pivotal concept of health behaviour itself ever questioned. In addition, critics have suggested that the concept insidiously supports variations of neoliberal ideology and responsibilisation, for example through such creative terms as liberal paternalism.

The collection of chapters in this book responds to the fact that surprisingly little critical attention has been paid to how health behaviour is actually conceptualised, whether this might explain why attempts to change what people do for any extended period seem to be so difficult, and what the limitations of the term might be. Collectively, these contributions show that across this burgeoning corpus of work there is remarkably little discussion of power or conceptualisation of sociality beyond a largely epidemiological idea of population. They explore whether there are alternative ways to both theorise and conduct research into what people do and don't do in relation to their health. And, given that very little in this field of research has attempted to capture the specific and detailed qualities of people's activities in particular situations, they demonstrate how investigating local minutiae might actually be crucial to provide general insight. Thus, by drawing on a range of theoretical approaches and empirical studies, the chapters highlight the potential of sociology, and the social sciences more generally, to provide complementary or alternative ways of considering human activities that relate to health.

As a way of introducing the chapters, and pre-empting the ways in which they critically engage with the concept of health behaviour, I want to spend just a little time describing something of the underlying logic that determines not simply how health behaviour is conceived in the abstract, but perhaps more significantly how it is constructed through research activities designed to address contemporary health problems. Implicitly I draw on my experiences working in a multidisciplinary team consisting of health psychologists and behavioural scientists, primary and secondary care medics, epidemiologists, statisticians and the like. While this is in part a caricature, my intention is to be provocative. It is not simply to pave the way for the more substantive contributions, but to help catalyse a further debate that needs to be had: that, as social scientists often working alongside other disciplines in health research environments, we have, ourselves, in many instances accepted the concept of health behaviour far too readily.

Originally healthy behaviour (Kasl and Cobb 1966), or health-protective behaviour (Harris and Guten 1979) referred to the strategies people might adopt to prevent disease. In a much cited piece of research, Belloc and Breslow (1972) argued that personal lifestyle (sleep, diet, physical activity and smoking) impacted on health in diffuse ways and that there was a direct correlation between them and the risks of ill-health. Interestingly, Matarazzo (1983) later drew directly on a biomedical paradigm to describe this kind of behaviour as a behavioural pathogen and contrasted this with health-protective behaviour, which he labelled a behavioural immunogen. What was significant was that, by adopting the clear distinction informed by biomedicine that some behaviour is unequivocally good whilst other kinds are detrimental, the behaviour itself became abstract and removed from any comprehensive, detailed description of what people were actually doing. And, although the original emphasis of health behaviour was on its positive role in illness prevention, because the primary focus came to be on behavioural change most research has come to focus on negative health behaviour. Even physical activity has, in recent years, been recast to fit this schema, as research has shifted from its promotion to addressing the ‘problem’ of sedentarism.

Initial attempts to encourage certain kinds of health behaviour, while discouraging others, were aimed at modifying people's health beliefs through education initiatives. By assuming that what people did was the result of deliberation and reasoning, addressing motives and intentions became central. As a result, Levanthal's self-regulatory model (Leventhal et al. 2003) was highly influential, since it proposed the ways in which individuals reflect on what they do prior to action. Drawing on both individual attitudes and socially determined norms, this psychological approach created the space into which researchers felt confident they could intervene. However, as studies began to report that there is often a gap between intentions and behaviour, Bandura's notion of self-efficacy (1977) was increasingly adopted. Further adapted by Ajzen, this general orientation proposed that as well as attitudes and subjective norms influencing intentions, certain beliefs affect levels of perceived control and that this might explain why intentions are not always translated into actions (Ajzen 1991). More recently, some psychologists have drawn from behavioural economics to explore alternative ways in which non-deliberate or automatic processes might explain why people behave the way that they do, rather than the more reason-based models that initially shaped behavioural science (Thaler and Sustein 2008).

A key point in all this, however, is that despite the evolution of the concept of health behaviour in the psychological literature, what has remained central is the linear order that conceives of various psychological determinants, potentially modified by social norms and triggered by environment cues, which then determine someone's behaviour. In other words, health behaviour is seen as the an outcome of an individual who is presented as the obvious focus of both the processes preceding behaviour and the agent of the behaviour itself. Thus, although contemporary behavioural science might not equate directly with classic behaviourism, because of its focus on mediating cognitive processes, behaviour is nevertheless conceived of as a definitive and observable entity that should not require abstract concepts or assumptions to identify or interpret it (Baumeister et al. 2007), just as Watson argued a century ago (Watson 1930).

In contemporary research, specific forms of health behaviour tend to be combined with other disease-related elements so that useful, multifactorial accounts can be established (Abraham et al. 2000). They have to be drawn out from the inherently chaotic variation of human activity and sufficiently standardised to resemble other items, such as demographic and physiological factors. Often a range of graphic representations during the research process and in final publications further confirm the epistemological parity between health behaviour and other variables; flow charts, tree diagrams, drawings of multiple boxes and arrows all map out the mix and the hypothesised relationships between them. Two key assumptions underlie this process: that kinds of behaviour can be considered to be distinct from each other and that they can potentially be controlled or altered once an accurate causal explanation is established.

The imperative to consider specific forms of behaviour as unique variables that can be studied and assembled alongside others means that they must be conceived of as discrete, stable, homogeneous, observable and, crucially, measurable. Often a distinction is made between subjective and objective measures. The former consist of various methods of participant selfreporting – usually by questionnaires or diaries – and tend to be regarded as unreliable. In contrast, the term objective measures increasingly refers to various forms of electronic technologies that can record data relatively unobtrusively and independently of the participant. Thus, embedded in the very objects of study is a preconceived notion not only of what they are, but also how they function.

But because research is only conducted on kinds of behaviour that already fulfil these criteria, other health-related activities or variations of what people do in different situations that escape the parameters of measurement are excluded. The social, affective, material and interrelational features of human activity are effectively eliminated, as behaviour becomes viewed as an outcome of the individual and determined only by such things as motives, intentions and the subjective reception of norms and cues. In response, there has been a growing acknowledgement that the specifics of context are significant and somehow need to be taken in to account. However, citing context to situate individuals in their physical and social environment indirectly serves to reinforce what is of primary importance and fore grounded. Health behaviour remains contrasted against a backdrop of interrelated factors that fall outside the specifics of research because they have not, or often cannot, be rendered into variables. As a consequence, although discussion of context may ostensibly resemble adoption of a more sociological perspective, by preserving the delineated characteristics of health behaviour and pre-empting a focus for causal explanation, its inclusion frequently serves simply to maintain, rather than revise, conceptualisations of health behaviour.

So why is problematising the category of health behaviour important? After all, it would be reasonable to argue that not only are these weaknesses inevitable, but they are actually highly productive and necessary in order to construct a particular kind of object of enquiry. But a danger of this is that the notion of behaviour becomes so reified that it fails to provide any critical insight into what people actually do and why. In this, then, lies the inherent conservatism of adopting categories of behaviour a priori. The issue is not simply that they continuously get reproduced from one research project to another but that they increasingly become naturalised the more they are ‘understood’. It is also clear that the focus on health behaviour unavoidably presents a particular moral explanation, as issues of responsibility and agency are distributed in specific ways along causal pathways that inevitably converge on the individual. Although not necessarily intentional, this individualising characteristic can all too easily align itself, and further legitimate, public health and policy strategies that ignore the complex structural issues that underpin the political economy of health.

This collection of chapters contends, in different ways, that many of the limitations and consequences of the concept of health behaviour can be potentially addressed by drawing on a broader notion of health practices. In contrast to the idea of specific behaviour, everyday practices are always locally situated and composite. They are not a direct result or outcome of mental processes but emerge out of the actions and interactions of individuals in a specific context. Thus, the word practice has the potential to resist both the psychologising and the individualising features that ultimately have come to define the term health behaviour. However, adopting such a conception means it is perhaps impossible and even undesirable to try and identify when exactly an action starts and when it ends, or the extent to which one action is distinct from another. It also potentially resists the search for causal explanations, in the form of identifying determinants, and instead embraces the idea that practices are contingent on a whole variety of social and material factors. This is not, however, an argument designed to champion the impossibility of the social sciences genuinely engaging with contemporary health problems. But by being aligned with a language of systems, complexity, interactions and irreducibilities, such an approach must inevitably be modest, since it can only ever offer a partial interpretation. Nevertheless, it also means that issues of power and politics cannot be bracketed off but must be recognised as central features of any proposed method to influence or change people.

Identifying a variety of problems associated with the concept of health behaviour, and considering what possibilities a more practice-orientated approach might offer, the contributions in this monograph address many of the issues raised above in a variety of ways. As a result, grouping chapters together represents just one way in which the overlapping and cross-cutting themes in the collection might be navigated. A first set explores some of the theoretical approaches from sociology that have the potential to provide a counter to the individualised notion of health behaviour. To begin with, Armstrong argues that the whole shift towards encouraging patients to take control of their behaviour and, as a consequence accept responsibility, is remarkably recent. Importantly, he also suggests that ultimately agency itself has, in the process, come to be equated with health. Horrocks and Johnson extend this theme by critically examining the ideological assumptions associated with such things as self-management and choice. They describe the ways in which health psychology has served to support and reproduce a range of values that inevitably engage more favourably with some groups of people more than others. Veenstra and Burnett also tackle the concept of agency through the influential work of Bourdieu and in particular through his rendering of structure–agency as coconstituting rather than in opposition. They argue, however, that the relational characteristics of many of Bourdieu's terms tend to be underemphasised and that, if accounts of health practice are to be of value for applied work, it is crucial to embrace this ontological imperative. Finally, Frohlich and Abel return to the unequal distribution of health and health-resources with the observation that those who are most deprived are the least likely to alter their health-related practices. By integrating Sen's capability theory with the theories of Bourdieu, the authors make a shift from framing the issue in terms of who possesses what capital to thinking about where there might be social and cultural opportunities for change.

A second group of chapters draw on accounts of particular health initiatives to explore the limitations of behaviour-based interventions and the potential for social science approaches in current health research. In different ways they extend the general theoretical perspectives introduced by the initial chapters to illustrate the extent to which people's actions arise from their interactions both with other people and the material environment. Implicitly drawing on arguments of scale, the chapters present a variety of cases in which apparently individual actions are influenced by forces that can only be conceived of at a social level. This implicitly alters not merely the focus of causal explanations but highlights the ways in which practices emerge from, and are always contingent upon, a wide range of factors that operate alongside, rather than ‘prior to’. As some of the authors explicitly propose, this offers new ways to think about health interventions that need to take into account factors that defy reductionism. Firstly, Baum and Fisher continue with the theme of health inequalities and discuss how, despite the weight of evidence for the existence of social determinants of health, governments nevertheless are attracted to behavioural explanations for ideological reasons. Given this trend, they conclude that health policies are unlikely to ever address the broader social foundations of health. Ong et al. take up the same issue through a discussion of context and, using two studies as illustrative examples, argue that what is commonly framed as the background features of living with a chronic condition should be refigured to be integrated in existing research designs. Nettleton and Green then draw on case studies to discuss a number of practices relating to transport and physical activity and suggest that a Bourdieusian-informed approach can demonstrate the extent to which existing tacit knowledge and habitus shape the conditions of possibility for change, and therefore that public health must attend to their significance.

The next three chapters extend these arguments by providing detailed qualitative accounts of specific health practices. Addressing the health issue of substance misuse by women who are pregnant, Benoit et al. point out that the key to the effectiveness of any intervention is the way that people see substance abuse as problematic. The authors show that views on such things as health risks should not be regarded as individually held beliefs that go on to directly influence behaviour. Instead, they are inherently social discourses that are only meaningful through the ways in which participants talk, compare and situate themselves in relation to others. Complementing this position, Lyons et al. focus on the alcohol consumption of people in their mid-life. Similarly rejecting any approach that assumes that drinking is the result of rational decision-making, they describe how many of the factors that shape alcohol consumption are inherently cultural and embodied. In particular, they include aspects relating to gender and, although this is frequently omitted in health behaviour research, the desire to be moderately intoxicated. Finally, adopting a more overtly anthropological orientation, van der Sijpt explores issues relating to reproduction and contraception in Cameroon. Like many of the other chapters, the author explicitly rejects behavioural models that rely on any version of rational choice theory. But she adds to this critique by arguing the same values underlie the notion of individual rights and that these do necessarily translate easily to other cultural contexts. Instead, van der Sijpt suggests that the idea of navigation better captures the practices by which women engage with the different options on contraception and reproduction that they encounter in their daily lives.

The final pair of chapters could be said to critique the concept of health behaviour not by drawing on established perspectives of the social but by conceiving of practice as a means to resist seeking direct causal antecedents – whether they be individual psychological processes or, indeed, more diffuse social influences. Will and Weiner examine people's talk about cholesterol reduction and note the ways that people often accommodate contradictory and inconsistent accounts. Beyond an analysis of discourse, their argument suggests that the processes of talking and making sense of everyday practices never need to be fixed or singular because ultimately these are accounts of activities that are not coherent; they are practices, not behaviour. Finally Vogel and Mol explore how the drive for healthy eating, and the various forms of knowledge that support this, have become the antithesis of eating practices associated with pleasure. They argue that linking eating practices with enjoyment is not natural but a relationship that is acquired. By attending to the variety of social and material elements that enable such practices to be pleasurable, an alternative strategy to traditional interventions intended to correct unhealthy behaviour could potentially be developed.

No overview of the chapters, especially as brief as this, could claim they all share common approaches or conclusions. Nevertheless, it is clear all the authors are uneasy about the dominance of the concept of health behaviour, based on theoretical, methodological or political grounds. The chapters suggest that the concept is too contained, too delineated and too far removed from everyday social life. So perhaps this, then, is the final value of reading the chapters together – that the term health practices ultimately is useful not because it claims to be a direct alternative, or substitute, for psychological and behavioural approaches but precisely because it allows for sufficient degrees of freedom such that no single theory can ever fully stabilise how it can or should be applied.

References

Abraham, C., Norman, P. and Conner, M. (eds) (2000)

Understanding and Changing Health Behaviour: From Health Beliefs to Self-regulation

. Amsterdam: Harwood Academic Press.

Ajzen, I. (1991) The theory of planned behaviour,

Organizational Behavior and Human Decision Processes

, 50, 2, 179–211.

Bandura, A. (1977) Self-efficacy: toward a unifying theory of behavior change,

Psychological Review

, 84, 2, 191–215.

Baumeister, R., Vohs, K. and Funder, D. (2007) Psychology as the science of self-reports and finger movements: whatever happened to actual behaviour?

Perspectives on Psychological Science

, 2, 4, 396–403.

Belloc, N. and Breslow, L. (1972) The relationship of physical health status and health practices,

Preventative Medicine

, 1, 3, 409–21.

Harris, D. and Guten, S. (1979) Health-protective behavior: an exploratory study,

Journal of Health and Social Behavior

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Kasl, S. and Cobb, S. (1966) Health behavior, illness behavior and sick role behavior,

Archives of Environmental Health

, 12, 2, 246–66.

Leventhal, H., Brisette, I. and Leventhal, E. (2003) The common-sense model of self-regulation of health and illness. In Cameron, L.D. and Leventhal, H. (eds)

The Self-regulation of Health and Illness Behavior

. London: Routledge.

Matarazzo, J.D. (1983) Behavioral immunogens and pathogens: psychology's newest challenge,

Professional Psychology: Research and Practice

, 14, 3, 414–16.

Thaler, R. and Sustein, C. (2008)

Nudge: Improving Decisions About Health, Wealth and Happiness

. New Haven: Yale University Press.

Watson, J. (1930)

Behaviorism

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2Actors, Patients and Agency: A Recent History

David Armstrong

Introduction

When was it first possible to say that patients had agency? The term was certainly used in the 19th century but only in the context of differentiating human action from non-human or ‘natural’ forces. An outbreak of pestilence and famine in India, for example, identified ‘human agency as the instrument of dissemination and contaminated water as the vehicle of infection’ (Bombay Sanitary Report for 1897 1898: 1265). More broadly, events were construed as ‘through the agency of Man’ as against, say, ‘the agency of insects’. Although this use continued during the first half of the 20th century, agency came more commonly to refer to an organisation that provided a service, as in a voluntary agency or a health agency. In more recent years however, agency, as applied to patients and their behaviour, has taken on a more powerful sense of individual autonomous action. This chapter attempts to describe the emergence of this latter use of agency through contemporary medical, sociological, psychological and ethical writing and argues that the new application of the term reflects more than a change of semantic fashion but rather a fundamental reconstruction of patients' identity that began in the second half of the 20th century.

The New Patient Project

In 1951, when Parsons described the significance of the sick role in medical encounters he identified three salient features of the situation of patients; namely, helplessness, technical incompetence and emotional involvement. The sick person was not regarded as being responsible for his (sic) condition and therefore could not avoid it or mitigate it by willpower. Further, for Parsons, the very nature of patienthood was such that the sick were not competent to help themselves; they therefore required professional help that, in its turn, imposed a further disadvantage because patients were not in a position to know what needed to be done or how to do it. Finally, Parsons argued that the situation of illness presented patients and those close to them with complex problems of emotional adjustment that he described as a situation of strain.

Clearly within Parsons' analytic framework there was little space for independent action by the patient. Patients were vulnerable and irrational, dependent on a benevolent medical profession to address their healthcare needs and assuage the emotional strain of illness. The formal sick role, as conferred by medicine, established expectations and obligations about motivations but little about subsequent behaviour except in generalities such as ‘to comply with medical advice’. Patients were docile figures with no responsibility for their predicament and minimal involvement in their own care.

Seven years later, in 1958, Hochbaum published a report of a ‘socio-psychological study’ entitled Public Participation in Medical Screening Programs that investigated the problem of patients who failed to respond to invitations to attend newly developed screening programmes, especially for tuberculosis. His report was one of a number in the immediate post-war years that explored patients' behaviour, most of which were concerned less with behaviour and more with non-behaviour, particularly in the form of non-attendance for health care (Glasser 1958, Koos 1954, Rosenstock et al. 1959). Yet, while the failure of patients to attend as expected formed the common theme across these reports, Hochbaum's analysis can be seen, in retrospect, as providing a particularly clear programmatic statement of a post-war project to transform the nature of patienthood.

The main challenge of screening was that it focused on pre-symptomatic disease. In the absence of symptoms patients had no means of knowing whether or not they had the disease in question. Feeling healthy therefore did not equate with actually being healthy: ‘In the absence of noticeable symptoms, accepting the possibility of having contracted tuberculosis depends on an additional belief that the absence of such symptoms does not necessarily assure a state of health’, observed Hochbaum (1958: 5). The challenge for public health was to raise the patient to a higher level of alertness, to the possibility of diseases that remained hidden from personal experience. As Hochbaum explained:

In the case of a person who is not aware of symptoms, psychological readiness … requires a full acceptance of the possibility that he could have a serious disease such as tuberculosis without noticeable warning symptoms. (Hochaum 1958: 6–7)

The task ahead therefore was to promote a constant state of self-appraisal in all patients, a sort of ongoing reflexivity about illnesses both actual and potential. Being alert to the possibility of disease could not, however, be reduced simply to having appropriate knowledge:

[The] difference in participation in case-finding programs between well-informed and poorly informed respondents is not an impressive one … does it mean that we have to consider more complex relationships between what people know and what people do? (Hochbaum 1958: 15)

In many cases, Hochbaum observed, some patients might know about the dangers of tuberculosis but not really believe them, while others did believe them but thought the danger applied to other people and not themselves. Indeed:

Information is depersonalised, isolated from the springs of behavior. Information alone is not a motivating force, although it is basic to most behavior. Without knowing what to do and how to do it, one cannot act. But only when this knowledge is related in some way to one's needs will it actually be translated into action. (Hochbaum 1958: 16–17)

Patients were not to be instructed, for how could this approach be expected to achieve that desired permanent state of readiness? Instead, patients had to cultivate their subjective awareness and place their behaviour under constant observation. This would require a change in the dialogue and relationship between doctor and patient: it required medicine to use the patient's words in a more subtle way. Instead of listening to the patient's symptoms, filtering out the unreliable ones and focusing on those that might have pathological significance, the symptoms needed to be reframed as mechanisms for accessing an inner patient identity. Symptoms were to be treated as part of a patient's experience irrespective of their clinical significance:

Symptoms in this report referred to the respondent's interpretation of what constitutes tuberculosis symptoms and not necessarily to medically valid interpretations of the disease. In short we shall be concerned with what people believe not with the correctness of these beliefs. (Hochbaum 1958: 5)

Hochbaum's analysis pointed in three new directions. The first was the refining and fine-tuning of those psychological mechanisms that underpinned the state of readiness; the second, the application of that psychological state to symptom appraisal; and the third, the promotion of autonomous action based on these appraisals and interpretive processes. Each of these strategies, in their turn, was to be articulated on the patients' behaviour, initially their healthcare attendance or help-seeking, later, risk and illness management. Were his project to be implemented, Hochbaum claimed, it would not only assist the screening programme for tuberculosis but ‘similar principles are likely to be operative with the behavior of the public in other health areas’ (Hochbaum 1958: 23).

Hochbaum's design was a radical one: a staged reconstruction of the self and its sense of agency. Patients had to believe themselves vulnerable to unspecified illnesses while at the same time mistrusting their own subjective interpretations of symptoms as indicators of disease. This new scepticism, when combined with the attention to the self implied by the new psychological preparedness, placed every patient in an ambiguous state with regard their health. Over subsequent decades this reconstruction of personal experience engendered that state of reflexivity where knowledge and beliefs were not held as a resource pointing to the world outside the individual but as an analytic frame governing awareness of self.

Hochbaum's ambitious programme could not be established overnight; the project would take many decades to realise and would require the invention of new constructs and new technologies to further its aims. Even so, Hochbaum's statement of the problem and the way forward can be seen as a blueprint for future analysis and discourse – the instillation of a new attribute of agency in the minds and bodies of every patient and the construction of a malleable and willing patient who would be a voluntary participant in health programmes, as the potential for control of the patient was transferred from medicine to the patients themselves.

The Appraisal Process

Although the problem of non-attendance had been identified in the late 19th and early 20th centuries in terms of defaulting from treatment it was only applied to those health-related activities, such as attendance for compulsory vaccination or treatment for venereal disease, that carried legal or quasi-legal sanctions. But around mid-century the problem was extended to non-participation in public health programmes such as screening using mass miniature radiography (Dick 1945, Hochbaum 1958) and polio vaccination (Rosenstock, Derryberry, and Carriger 1959). And whereas character flaws such as indolence and apathy had formed the main explanatory framework for defaulting, the study of non-participation demanded the investigation of more complex cognitive-behavioural processes that preceded the decision not to attend. Further, such analyses of the ways patients made decisions could also be applied equally to those who chose to attend public health programmes and clinical consultations.

During the immediate post-war years patients presented themselves in the consulting room face-to-face with the doctor, as they had done in previous years, but it seemed increasingly unclear how that manoeuvre was accomplished. In 1961, using Parson's formulation of the ‘tendency to adopt the sick role’ (measured using responses to hypothetical symptoms) and levels of stress, Mechanic and Volkart (1961) tried to predict the illness behaviour, as they described it, of a group of college students. Like Hochbaum a few years earlier, Mechanic drew attention to the interpretive space that surrounded symptoms:

[A] symptom viewed by a layman as not serious, may be of great medical consequence … Persons, of course, also sometimes visit the physician unnecessarily, thus, wasting valuable medical time. (Mechanic 1962: 193–4)

The patient therefore had to be both attentive and active so as to steer a difficult course between ‘early detection [that] might greatly reduce the future consequences of the illness, while, at the same time, discouraging tendencies toward hypochondriasis’ (Mechanic 1962: 193–4).

In subsequent studies of the transition of patients between their homes and the consulting room of the medical practitioner, the journey across physical space was used to explore the movement across the interpretive space in which symptoms were located. When social scientists and concerned doctors enquired about symptoms it was increasingly their lay, rather than medical, interpretation that informed the purpose of the interaction together with the promotion of a process of subjective reflection. Researchers such as Leventhal et al. (1980), Kleinman (1980), Locker (1981) and Tuckett et al. (1985) asked patients about how they made sense of symptoms, not to better diagnose disease but to understand the processes by which self-conscious decisions were taken to consider themselves as ill and/or ready to consult the doctor. The advice that doctors should consider eliciting their patients' explanatory models, illness representations and lay theories marked the spread of a generalised approach to the consultation that would bring to life patients' inner interpretive maps (Pendleton et al. 1984, McWhinney 1984).

Hochbaum, together with others in the Behavioural Science Section of the US Public Health Service, continued investigating the decision to make use of health care and in 1966 a colleague, Rosenstock, published a formalised version of the analytic framework called the health belief model to explain why people both used and failed to use health services (Rosenstock 1966). The model had four core elements centred round patients' perceptions of illness and its context: these were the perceived seriousness of the problem, the perceived benefits of action, perceived barriers and perceived susceptibility. The first three components had their origins in existing psychological theories (Rosenstock 1974) that captured the trade-off between costs and benefits of behaviour, but it was the fourth construct that best engaged with Hochbaum's vision of how threats might be personalised. It was not only necessary to recognise the dangers posed by unsuspected disease but also relate these concerns to the self.

In Hochbaum's analysis of 1958 the immediate threat lay in the dangers of asymptomatic disease, but other unseen hazards were also beginning to appear in the social world outside the body of the patients and their unknown pathologies. New concerns about environmental pollution (Carson 1962) multiplied in subsequent decades as the Green movement identified the existence of threats to health and life everywhere. For medicine in this period the form of a persistent, ubiquitous and hidden threat came from the newly discovered risk factor (Kannel et al. 1961). Risk factors were initially identified as existing within the human body (such as high blood pressure or raised blood cholesterol) but over the course of the 1960s they were extended to embrace external risks including behaviour (as in, for example, the dangers of smoking). By the mid-1970s many of these risks could be captured by the notion of lifestyle, at once a descriptor of a way of living and a sum of everyday activities, but also a catalogue of hazardous factors. Everyone was at risk, constantly.

A risk factor perspective, like screening and early diagnosis, was a pre-symptomatic technology. Being at risk required a constant state of vigilance towards the patient's internal and external environment as well as towards the person's own behaviour. According to Hochbaum's analysis it was a question of convincing patients of the threats posed by these proliferating risks and persuading them that the very absence of symptoms did not preclude disease. Being at risk therefore established the perfect machinery for placing the population in a constant state of readiness and awareness in regard their health. Recognition of risks everywhere was but another device for both engendering and reinforcing beliefs in individual susceptibility.

The sense of personal susceptibility embedded in the health belief model might have been a prerequisite for a patient's readiness for action, but there was always the danger that the threat of disease discovery that hovered constantly over an individual's future might lead to a form of psychological paralysis or even denial (Goldstein 1960). How could the capacity of patients to overcome these challenges be identified and promoted? In 1966 Rotter advanced the concept of a locus of control to describe the ability to respond to threat: some people had a strong external locus of control, believing that life was controlled by luck, charms or all-powerful others, while those with an internal locus of control believed that responsibility for action belonged to themselves and their own efforts. A focus on this psychological capacity for action was further enhanced in 1977 when Bandura proposed the construct of self-efficacy, the belief an individual had in their ability to carry out certain behaviour in a specific situation rather than the idea of a generalised reactive style embedded in locus of control. Self-efficacy reflected an important aspect of Hochbaum's notion of psychological readiness: if patients had self-efficacy then they also had the power to act. In 1988 the concept of self-efficacy was incorporated into a revised version of the health belief model (Rosenstock et al. 1988).

For most of the latter part of the 20th century the health belief model, adapted and developed, provided the core psychological mechanism for studying and explaining patients' behaviour. The model, reported Rosenstock, Strecher, and Becker (1988), generated more research into explaining, predicting and influencing health-related behaviour than any other theoretical framework. Yet, while the model was widely utilised, its explanatory and predictive power was never large (Harrison et al. 1992). Its success, however, should not be assessed in terms of its empirical claims but in its incitement of the very phenomenon it measured. The health belief model was less a theoretical framework and more a technology that promoted the idea of actions based on psychological readiness, a machine for bringing to life Hochbaum's vision in which all patients would show a psychological awareness of the hidden threats contained in everyday life. By the closing decades of the 20th century a framework for describing, explaining and furthering the psychological readiness that Hochbaum had prescribed for a future world were firmly in place; an analytic space had been opened up far removed from the passivity of the patient's role in the consulting room as described by Parsons. The patient was now primed for action.

The Path to Action

In 1974 Stimson summarised the results of 19 studies published between 1957 and 1969 that were concerned with whether or not patients took their medicine as advised by the doctor. The assumption underlying all of these studies, he noted, was that ‘the patient should obey or comply with what the doctor says. It is an ideal of the patient as a passive and obedient recipient of medical instructions’ (Stimson 1974: 99). Yet, as Stimson pointed out, people had their own ideas and attitudes about the use of medicines and they were not taking them in a thoughtless vacuum. Their actions in not following medical advice could therefore be construed as rational and deliberate.

In the 1970s the term non-compliance began to replace that of default in sociological writing on medicine-taking (Hayes-Bautista 1976) and a few years later medical writers also began self-consciously to use the expression ‘defaulters or non-compliers’. In the 1990s an even more non-judgemental expression, non-adherence, became the preferred descriptor and during the first decade of the 21st century it was joined by another term, concordance, that reflected the idea that if doctor and patient shared treatment decisions the problem of non-adherence should disappear, as no medicine would be prescribed without the patient's endorsement (Royal Pharmaceutical Society of Great Britain 1997).

Concordance implied a greater agreement between doctor and patient on the nature of the problem, the need for treatment and the most appropriate medication. Default and non-compliance had indicated a failure of the patient; lack of concordance reflected a failure of the consultation, mostly through the physician not having elicited the true nature of the patient's problem (Britten et al. 2000) or the patient's real concerns (Barry et al. 2000). Concordance therefore promoted a form of open consultation that encouraged the patient to express their true selves by verbalising their inner life-worlds (Mishler 1985).

The task of generating concordance had been facilitated by a new patient-centredness in the consultation. First identified by Byrne and Long in 1976, the emergence of the idea of a patient-centred consultation exactly paralleled the construction of an independent appraisal of the need for treatment as revealed in the spread of investigations into non-compliance and concordance. Patient-centredness and concordance were therefore two sides of the same coin: research studies demonstrated again and again that patients could be incited to adopt the state of psychological readiness described by Hochbaum in deliberating on medical decisions. It was then for clinicians to introduce these tactics into routine clinical practice (Kahn et al. 1979, Levenstein et al. 1986).

Post-war concerns about whether or not patients were taking prescribed medication as instructed were also mirrored in anxieties about self-medication. Patients choosing self-medication without the guidance of medical expertise risked using inappropriate or useless treatments or, worse, masking a serious illness. The medical view that self-medication was a potentially dangerous activity began to change during the late 1960s as successive reports showed it was not only extremely common but could be viewed as a reasonable alternative to using hard-pressed medical services (Dunnell and Cartwright 1972, Wadsworth et al. 1971). Indeed, in many instances the doctor might endorse the patient's decision and encourage patients to continue with some form of self-medication that the patient had initiated (Scott et al. 1960). By the mid-1970s responsible self-medication was increasingly seen as another part of a comprehensive healthcare package (BMJ 1975) and the term over-the-counter medicine entered common usage.

When in 1981 Dean reported a selected review of the literature on self-care, she found that earlier studies had focused mainly on the utilisation of physician and hospital services, delay in seeking care and patient compliance with medical regimes: