The Experience of Illness

Ray Fitzpatrick, John Hinton, Stanton Newman, Graham Scambler, James Thompson

• Publisher: Routledge
• Year: 2022
• ISBN:
  9781000577617
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Theory
• Index: Social Sciences

Originally published in 1984, this book focuses, firstly, on how patients interpret and act in response to symptoms of illness; secondly on how social and psychological factors influence the treatment process; and thirdly, on certain kinds of illness where the psychosocial perspective is of particular importance to the providers of health care – for example, chronic or particularly disabling illnesses. It demonstrates how essential it is to bring an interdisciplinary perspective from the social and behavioural sciences to an understanding and interpretation of behaviour in relation to illness. It will be of central concern to all health professionals in training and in practice and to social scientists interested in health care.

1 Introduction

In the twentieth century health care in the developed world has changed dramatically. Rapidly growing basic medical sciences have provided an ever more complex understanding of the body in health and illness. At the same time increasingly sophisticated diagnostic and therapeutic facilities have become available. Knowledge and technique have combined to transform medicine from the status of a craft to that of a technological science. Recently the growth has also occurred of ways of approaching health care which complement the dominant idiom of technology. The focus of this approach is upon psychosocial aspects of illness and treatment.

Two kinds of change within health care have made the development of a psychosocial perspective an urgent imperative. On the one hand it has become increasingly apparent that the traditional ‘craft’ skills of health care may be jeopardized if the training of health workers concentrates exclusively on the technological and biomedical dimensions of health care. On the other hand changes in the kinds of goals which are set for medicine require new forms of health care practice in which a psychosocial perspective is of particular importance. Both changes require elaboration.

The traditional skills of health care

It is understandable how, in a society dominated by technological values, the occupations of health care, especially medicine, might be entranced by the technical forms of diagnosis and therapy which have come to the fore in the recent history of medicine. This process could involve diminishing importance being attached to such social skills as listening, eliciting, recognizing, and explaining. The contribution of the behavioural sciences is partly to demonstrate that an appreciation of the interpersonal components of health care may be acquired in the same way as the health professional learns a framework of biological knowledge relevant to the provision of health care. This view can best be discussed in terms of specific examples. One obvious primary task of the clinician is the identification of the patient’s problem. There is evidence from such diverse settings as paediatric clinics (Korsch, Gozzi, and Francis 1968), neurological clinics (Fitzpatrick and Hopkins 1981b), general medical wards (Maguire et al. 1974) and general practice (Marks, Goldberg, and Hillier 1979) that a large proportion of the concerns and problems experienced by patients are not recognized by their clinician. The role of the behavioural sciences in response to such evidence is threefold:

1. First and foremost to provide a framework of concepts and evidence to enable more attention to be given to the complexities of patients’ presentations. Only by elaborating a language and network of ideas from evidence about patients’ experiences can the psychosocial factors in illness be made as ‘visible’ as the physical factors emphasized in the rest of training.
2. It behoves the behavioural sciences to show that the ability to recognize psychosocial aspects of health problems can develop from training and sensitizing. Evidence that this is so is now beginning to appear (Goldberg et al. 1980).
3. There is evidence, such as the study of paediatric clinics cited above (Korsch, Gozzi, and Francis 1968), that the recognition by health workers of patients’ broader concerns with regard to the problems that they present is associated with substantial benefits to the patient. Research needs to build on such evidence, further discussed in Chapter 2, to explore the ways in which the health worker’s support, personal interest and sensitivity to patients’ concerns may directly influence the outcomes of health care.

Another central task of health care is providing reassurance and comfort to those who are in distress with illness. The behavioural sciences have begun to provide a framework for coping with patients’ concerns regarding illness (Chapter 2) and the anxieties surrounding the experience of surgery (Chapter 7). The dynamics of reassurance in such circumstances are not commonsensical (Kessel 1979). In more serious, particularly terminal, illness there is a limit to the comfort or reassurance that is possible and, as is suggested in Chapter 11, there are good reasons for scepticism about the appropriateness of rigid nostrums and policies in the care of the dying. Nevertheless careful research can make clearer to those responsible for the care of the dying some of the common trajectories that patients will experience (Kübler-Ross 1970), or the patterns of communication within families of the dying (Chapter 11).

A third task of health care has always been to provide an explanation for illness and instructions to the patient as to how to deal with it. At the extreme, illness may be so devastating and unexpected that it is very difficult for the doctor to provide any really satisfactory explanation. However, for many health problems, information can be given regarding the likely causes, course, prognosis, and therapy of the illness. Giving such information may be the most crucial task performed by the doctor for many problems presented to him. Yet as indicated in Chapters 5 and 8 it is the area of health care which causes most dissatisfaction amongst patients. The evidence also shows that giving appropriate health information is a social skill which can be improved.

Thus these core tasks of health care offer their own intellectual challenges and require a framework through which skills may be acquired and some of the dilemmas and limitations of health care recognized.

New challenges in health care

A range of new problems confront medicine. They arise partly out of the increasing demands upon the patient resulting from the more complex medical treatments now available and partly because of changing patterns of ill health and changing priorities in health care.

Many modern medical treatments, if they are to be at all successful, require of the patient a very long-term commitment to often arduous regimes. The careful control of diet by the diabetic clearly illustrates a form of treatment which makes arduous, long-term demands of the patient. Drug control of hypertension is now a potentially very effective form of therapy. The patient’s adherence to the regime is crucial. Appreciation of the patient’s perspective and of the problems of adherence has been shown to be an important influence upon the doctor’s ability to help such hypertensive patients adhere to their medication (Inui, Yourtee and Williamson 1976).

As disease prevalence and health priorities change, infectious diseases have given way to chronic and degenerative problems. With such chronic mental illnesses as schizophrenia or physical disorders such as severe arthritis, health care has come to focus on quite modest and more realistic goals such as achieving for the patient a level of satisfactory functioning within the constraints set by the disorder. Such targets necessitate greater attention to the economic, social, and psychological circumstances of a patient. The health worker must make decisions that go beyond the primary physical disorder of the patient and beyond the immediate crisis period of medical intervention. The behavioural sciences have contributed towards making such decisions more soundly based. Thus Vaughn and Leff (1976) have shown that very specific aspects of emotions in the family are associated with a poor prognosis for schizophrenic patients after discharge from hospital and that careful consideration by the clinician of such factors can considerably reduce the chances of relapse back into hospital. The long-term consequences of stroke and head injury, reviewed in Chapter 9, require a broader attention to a range of physical, psychological, and social problems.

An equally important challenge stems from the growing recognition that much illness is preventable, even if the extent of practical prevention is still a subject of debate (Doll 1983). One needs to recognize that prevention may concern either avoiding the onset of disease or avoiding the re-occurrence or deterioration of a health problem. A large part of avoidable disease suffered in modern societies may be traced to aspects of behaviour. Two familiar and commonly cited examples are smoking and overeating. Increasingly it is argued that the health worker is, or should be, at the centre of influencing behaviour (Tudor Hart 1981). Whilst health workers such as general practitioners accept this role of health educator in principle, they may in practice feel uncomfortable and uncertain and avoid intervening in this way in consultations (Boulton and Williams 1983). These difficulties may partly account for the modest, although crucial, effects general practitioners have in altering patients’ smoking habits (Russell et al. 1979). Nevertheless, according to bodies such as the Royal College of General Practitioners (1981) this constitutes a most vital role for primary care and evidence regarding the constraints and opportunities of communication (Chapters 5 and 6) will be of increasing importance.

Focus of the book

The purpose of this book is to outline the contributions of the behavioural sciences to the understanding of experience of illness and treatment. The focus throughout the chapters is upon social and psychological processes that shape the experience of illness presented to health care and the responses of patients to treatment for their problems. We have limited our attention to problems taken to health care. In writing this book, we are primarily directing ourselves therefore, to the health professionals concerned with the care of patients, together with those social scientists who are involved in research and teaching in the health field. With this set of concerns in mind the contributions are organized into three sections. In the first section – ‘Illness and Help Seeking’ – the emphasis is upon the social and psychological factors that influence the presentation of health problems. The process of defining illness and seeking help is clearly one which is considerably influenced by a range of cultural, social and economic factors.

The second section of the book concentrates on ‘The Experience of Treatment’. Here the focus is upon patients’ responses to treatment, whether in terms of the anxieties provoked by illness and treatment or in terms of patients’ evaluations of the quality of their treatment and of the appropriateness of the health worker’s actions. The influence of the health worker is a central issue of the section.

In the last section – ‘Chronic and Terminal Illness’ – the more devastating and demanding effects of long-term and terminal illness are discussed. It is apparent that, in the range of health problems discussed in this section, the intimate connections of biological, psychological, and social factors are of particular importance. The distress of illness involves not only the patient but his or her family and social network.

The book is intended therefore as a contribution toward the kind of psychosocial perspective upon illness which must increasingly become a core part of the thinking of the health worker. Others before us have advocated such an integration. Engel (1977) has clearly argued that the ‘biomedical model’ of disease must be radically supplemented to become a ‘biopsychosocial model’ to incorporate social, psychological, and behavioural dimensions of illness. He proposes that medicine should adopt a systems approach in which it is recognized that disease can be understood by means of several hierarchically organized levels or sub-systems from the cell through levels such as the person, the family, and ultimately society. Others (Katon and Kleinman 1981) have attempted to develop his ambitious ‘biopsychosocial’ perspective by means of illustrative clinical case material. Katon and Kleinman, for example, discuss a patient with duodenal ulcer. They explore the different levels of explanation of the problem from the biological through to the social, showing the variety of treatment options from drug therapy, through dietary advice and family therapy to intervention at the level of social stressors. Kleinman, Eisenberg, and Good (1978) have advocated what they call a clinical social science. They argue that an integrated biopsychosocial perspective needs to be fostered by institutional arrangements such as having social scientists and health workers sharing elements of training, working closely together within a department of clinical social science, and carrying out teaching and research from immediate clinical experience.

Whether progress is envisaged in terms of the theoretical integration of disciplines by means of systems theory, or in terms of the institutional integration of social scientists and clinicians in particular academic or health care settings, writers such as Kleinman acknowledge the difficulties of bringing a psychosocial perspective to bear in health care. There are prior problems which have perhaps received less attention. The social science to which reference is made is in reality not one unitary discipline but composed of many sometimes conflicting approaches.

A psychosocial perspective would presently reveal a diversity of methods, acceptable forms of evidence, differing problems, and practical interests. This heterogeneity is explained by the diversity of academic disciplines which contribute to the perspective. One major contributor is psychology which in turn is diverse in focus and interests. It has developed a variety of concepts relevant to the experience of illness, from personality and other forms of individual variation through models of coping and decision-making and more social-psychological analyses of exchanges in health care. It has also traced many intimate connections between the cognitive and the emotional aspects of the experience of illness. Sociology has particularly examined notions such as power, conflict, and divergence of interests in examining relations in health care. Social administration and social medicine have been concerned with issues such as the use of health services by different social groups. Social anthropology has increasingly focused on health care as a cultural belief system. Medical specialties such as psychiatry and general practice have, in the work of authors such as Eisenberg (1977) in America and Balint (1957) in Great Britain, contributed new conceptual frameworks for clinical use in identifying and responding to patients’ problems and motivations.

Inevitably the variety of concerns – from identifying problems in the use of health services through to providing models of clinical relevance to the doctor – have led to a diversity in fundamental assumptions that have sometimes reduced the frequency of exchanges across the disciplines that constitute a psychosocial approach.

In addition, institutional pressures within academ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Original Title Page
• Original Copyright Page
• Table of Contents
• Acknowledgements
• 1 Introduction
• Part 1 Illness and Help Seeking
• Part 2 The Experience of Treatment
• Part 3 Chronic and Terminal Illness
• References
• Name index
• Subject index