The Sociology of Long Term Conditions and Nursing Practice

Elaine Denny, Sarah Earle

• Publisher: Bloomsbury Academic
• Year: 2009
• ISBN:
  9781350311114
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

In recent years there have been major developments in how long term conditions are managed and so it is important nurses understand the rationale behind policy initiatives and their implications for practice. This timely book provides a unique examination of the sociology surrounding long term conditions and the experiences of the patients who have them. It examines the social context of chronic illness and contains individual chapters on the common long term conditions present in the United Kingdom today.

PART I

Introduction

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Elaine Denny and Sarah Earle

Part I of this volume focuses on theory, policy, and research relating to chronic illness and long term conditions. Using a sociological framework it considers the way in which contemporary perspectives and policies have developed, and examines the influence of research on policy and practice. While it may be tempting for busy practitioners to move straight to the empirical ‘real world’ research of Part II, a reading of these early chapters will facilitate a deeper and contextualised understanding of the lives of those living with long term conditions and the challenges involved in translating government policy into practice.

The first chapter – written by Elaine Denny and Sarah Earle – takes a historical approach to the development of a sociology of chronic illness, beginning with Parson’s concept of the sick role and its applicability to the idea of chronic illness, progressing through some of the major writers in the field up to the very recent post modern perspectives developed by theorists of the sociology of the body. Denny and Earle explain how the genre has moved from exploring specific disease states, thus reinforcing a biomedical model of illness, to one that recognises the diversity of human experience. This chapter provides the theoretical framework which informs the chapters in Part II, and demonstrate how both structural and interpretive sociology have informed research into chronic illness and long term conditions.

Chapter 2 then moves to the policy issues and policy responses provoked by the growing importance of long term conditions as a modern health concern. In this chapter, Alistair Hewison and David Cox set out the policy problems raised by the increasing number of people living in the community with long term illness and disability in the United Kingdom. They identify the challenge that this poses for policy makers and analyze the government’s response in terms of policy strategy and initiatives. Hewison and Cox provide an insight into how the care of people with long term conditions is likely to be manged over the next few years, and particular emphasis is given here to the increasing importance for the role of nurses in dealing with this challenge.

In Chapter 3 Gayle Letherby considers issues of method, methodology and epistemology relevant to researching people with long term conditions. This chapter highlights how the methods we choose and our methodological experience are influenced by the topic under investigation. Furthermore, Letherby argues, the research process itself influences the research product, and this chapter provides an overview of these issues highlighting the political significance of issues of method, methodology and epistemology. The chapter offers advice to anyone contemplating conducting their own social research into long term conditions, but the information contained here is equally valuable to those reading the research of others in order to inform their own practice.

These chapters all have the main aim of providing the context in which developments in the management of long term conditions are taking place, and setting the clinical work of practitioners within a social and policy framework. Social science research is increasingly used to inform the development of policy, and to evaluate its implementation and outcomes. This part of the book provides the background with which to move on to Part II which considers individual conditions, and uses empirical and other research work to explore them from a sociological standpoint.

1

Chronic illness, disability and the politics of health

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Elaine Denny and Sarah Earle

Introduction

In many modern societies, individuals are living longer lives, but those lives are not always lived in good health. Chronic illness – which refers to a long-term, sometimes permanent and intractable condition – has seen an ‘epidemiological explosion’ (May, 2005, p. 16) in societies characterized by industrialization, affluence and wealth. Although not all sociologists agree that there has been an epidemiological explosion in chronic illness (Armstrong, 2005) there is, at least, a strong political and policy imperative to understand the distribution of chronic illness, the experiences of those who live with these conditions, and the impact of this on nurses and other practitioners. Sociologists are interested in studying chronic illness rather than disease because it shifts the focus away from a paternalistic medical approach to health to one which focuses on subjective, lived experiences as well as on the relationships between patients and practitioners, and between these and the wider society.

Sociologists have been interested in health and healthcare for over 50 years, although there have been developments in conceptual and theoretical, as well as empirical and methodological, emphases over time. Early accounts of illness in the 1950s drew on functionalist sociological theory to develop ideas about the role of sickness within society and on the relationships between doctor and patient. This chapter begins by examining this idea by exploring the work of Talcott Parsons (1951) and his ideas on the ‘sick role’.

Later analyses of chronic illness were influenced more by an interpretivist sociological tradition, which sought to understand lived experiences and the ways in which individuals coped with chronic illness in the day-to-day. The work of Erving Goffman (1963) has been particularly influential in developing an understanding of the relationship between stigma and chronic illness and has been applied to a wide range of conditions.

Following on from this, an interest in identity and personal biography developed. This focused on how chronic illness, which is often uncertain and intractable, caused disruption in the lives of those individuals with chronic illness. The work of Michael Bury (1982) and the development of his concept of ‘biographical disruption’ has been highly influential in this field. Narrative approaches to research on chronic illness then became popular as a method of exploring how individuals make sense of chronic illness.

The trajectory of chronic illness is not only uncertain but it is one that can lead to considerable pain and disability. So, much later, the development of disability theory and the sociology of disability began to challenge some of the conceptual and theoretical ideas on the sociology of chronic illness. Disability theorists were keen to demonstrate how disability should be located within the barriers posed by society rather than located within the body and in relation to specific individual experiences of chronic illness. The social model of disability, which was firstly developed by Mike Oliver (1983), highlights the importance of focusing on the structures of society, rather than on the individual. These ideas have had considerable political, practical and, to some extent, theoretical, currency.

However, most recently, the sociology of the body has sought to bring the body ‘back in’ to sociological accounts of health, disability and chronic illness, in particular. This approach – whilst accepting the importance of structural perspectives – tries to take into account the reality of living with chronic illness as one in which pain and disability is located within the body itself, and not just in relation to the social structure of society. Drawing on the various theoretical positions briefly outlined above, this chapter provides an overview of changing sociological perspectives on chronic illness.

Doctors, patients and the ‘sick role’

The notion of the sick role was developed by Talcott Parsons in the 1950s to explain how the ‘deviance’ of the sick role is managed. It was already known that the sick person occupies a special position in society but Parsons produced the first systematic sociological study of illness. Parsons (1951) argued that illness is a social phenomenon and needs to be understood in terms of societal functioning and in relation to the cultural values that exist within that society. More specifically, there is a functional interest of society in the minimization of illness, as the interference it causes to normal functioning risks becoming a social deviance unless it is controlled in some way. It is the role of the medical profession to sanction and legitimize illness, but it is the role of the patient that is of more interest to us here. Parsons developed the sick role to explain the conditions under which a person is able to assume the status of ‘sick’. There are four aspects to the sick role, usually expressed as two rights and two responsibilities. The rights are that a sick person is exempted from their normal social responsibilities and, as they are not held responsible for their illness, they can expect to be taken care of. The responsibilities of the sick underpin the conditional nature of the rights and are the obligation to want to get well and to seek technically competent help to do so. The medical practitioner too has obligations in this scenario. He/she must act solely in the best interests of the patient – what Parsons calls ‘collectivity orientation’ (1951, p. 435) – and must work to the highest standards of clinical competence. The rights of the doctor are more difficult to determine (Gerhardt, 1987), but focus on the exclusive access that the medical profession possesses to the body, and to privileged information.

Some sociologists now consider Parsons’ work to be outdated and irrelevant, although this is by no means universal (e.g., see Shilling, 2002 or Williams, 2005). In part, this perspective is based on the many critiques of Parsons’ work that have emerged over the years. For example, Parsons has been criticized for failing to fully account for differences in age, class, ethnicity and gender in his analyses. The concept of the sick role has also been questioned in relation to how relevant it might be to people with mental health problems. However, among the many critiques of Parsons one of the most consistent has been the failure of the sick role concept to account for chronic and long-term illness, where a cure and return to a pre-illness state is not possible. Gerhardt (1987), however, argues that such criticism is based on an incorrect understanding of Parson’s work. Indeed there are pointers within his work that he recognized the diversity of illnesses and the likelihood of recovery. For example: ‘First it must be remembered that there is an enormous range of different types of illness and degrees of severity’ (Parsons, 1951, p. 440) and: ‘The urgency of the need for help will vary with the severity of disability, suffering and risk of death or serious, lengthy or permanent disablement.’ (p. 440). In 1974 he made clear his belief that the sick role concept could be applied to chronic illness: ‘The issue is one of approximation rather than accomplishment of the goal of recovery, and permanently being exempted from a partial range of one’s duties rather than temporarily being exempted from more or less the whole range of one’s duties.’ (Gerhardt, 1987, p. 119).

Parson’s examination of sickness and the role of the patient and the doctor was a structural analysis that focused on the functioning of society, but in the 1960s sociological research moved to a consideration of more individualistic accounts of chronic illness.

Stigma and chronic illness as metaphor

The concept of stigma is generally attributed to the influential work of sociologist Erving Goffman and, in particular, to his book, Stigma: Notes on the Management of a Spoiled Identity (1963), although the concept is now also widely used within the social sciences more generally (Scambler, 2006). Goffman describes stigma as a socially constructed phenomenon whereby an individual shows: ‘evidence of an attribute that makes him different from others … and of a less desirable kind … he is then reduced in our minds from a whole and usual person, to a tainted, discounted one … whom has a spoiled identity’ (Goffman, 1963, p. 12).

Stigma, therefore, refers to the possession of an attribute that is deeply discrediting, setting an individual aside as deviant, rather than as a ‘normal’ member of society. However, Goffman refers to three distinct types of stigma: first, that which arises from physical deformity; second, that which can be attributed to blemishes of character; and, third, the tribal stigma of race, nation and religion. However, not all stigma are equally discrediting, since some attributes can be hidden from others and others not. Goffman, thus, makes the distinction between discrediting (easily visible) attributes – for example, physical deformity – and discreditable (less visible) attributes – for example, epilepsy. Discrediting attributes are immediately stigmatizing whereas the potential stigma of a discreditable attribute depends upon both the nature of that attribute and the extent to which knowledge of it is contained or managed.

There are many examples in the literature where the concept of stigma has been applied to chronic illness. For example, in a British study of discharge planning within a regional cancer centre ...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of tables and figures
• Series Editors’ Preface
• Acknowledgements
• Notes on contributors
• Introduction
• Part I Introduction
• Part II Introduction
• Concluding reflections
• Index