Body Image and Disfigurement Care

Robert Newell

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781135126285
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Intended for health care professionals working with patients who have suffered a threat to body image, whether from trauma, injury, disease, or the developmental process, Body Image and Disfigurement Care:
*offers practical advice about care
*critically appraises the existing knowledge-base
*describes the different theoretical approaches to body image disturbance
*puts forward a new model of what happens to people with disturbed body image.
While written in an accessible style, this is not a superficial text; it presents practical skills which can be used in clinical settings and these skills are based on appropriate research evidence, Interactive exercises enable the student to consolidate their learning and improve their understanding of the patient's experience of a threat to body image. Body Image and Disfigurement Care provides a sound source of help and advice about an issue of growing importance in modern health.

 

 

 

Chapter 1

---

Introduction

 

 

 

---

The nature of body image and disfigurement

We all form and retain images of our bodies. During our lives these body images go through many changes, some of which are desired, whilst others are not. For example, we attempt to alter the way our bodies look, perhaps out of a desire to express our individuality or to conform with commonly perceived norms of excellence of bodily appearance. Indeed, the cosmetics, fashion, sports and leisure industries are greatly concerned with the building and maintenance of these norms, which they then service through a range of products. At one extreme, aesthetic plastic surgery (cosmetic surgery) involves comparatively permanent changes to bodily appearance, through which people seek to achieve a desired appearance.

By contrast, some changes in bodily appearance, and associated changes in body image, are not desired. Whether from birth, through trauma or disease or as a result of the ageing process, certain aspects of bodily appearance are almost universally regarded as unwanted by those people who have received them. These changes in appearance and body image have received considerable attention in the nursing and medical literature, but there has been, surprisingly, comparatively little study of the experiences of those who have undergone changes to physical appearance, their adjustment to these changes, attempts to address their difficulties, or the reactions of others to them. Whilst some areas (for example breast cancer, anorexia nervosa) have received rather more coverage than others, there are many complaints for which issues of body image are much less frequently discussed, still less empirically studied. Moreover, in many cases, the focus of the study is on the illness which is associated with the changes to the body. Whilst this may seem natural, it is debatable how much such studies tell us about the relationship between changes to the body’s appearance and function, on the one hand, and body image and its disturbance, on the other. This is because disease-specific studies are often concerned not just with changes in appearance and function, but also with many other issues, such as the experience of being diagnosed with and living with a life-threatening illness, and the practical consequences of altered bodily functions.

Nevertheless, many people with altered body appearance and function are not suffering from any illness. It is part of the intention of this book to argue that the best approach to their difficulties is to examine responses to altered bodily appearance and function chiefly as issues or problems in their own right, rather than as add-ons to some disease process. Consider the burns survivor, the diabetic person, the person who has undergone amputation, the cancer patient no longer receiving treatment and ‘in remission’. For some purposes, it will certainly be relevant to consider them in the context of the event which gave rise to changes in their appearance. However, this book argues two things: first, that these individuals are not primarily (or even actually) patients – they are simply people who have a potential for difficulties related to body image; second, that an approach which examines the life problems of people experiencing a challenge to body image outside of the context of disease or illness is a useful way of addressing such difficulties. Appeals to disease and illness are not required except where these have a clear contribution to make to our understanding of these difficulties.

The aims of the book

This book puts forward a general model of what might be going on in body image, changes to body image following threat and ways of addressing any difficulties which may result. This model of body image and its disturbance (the fear–avoidance model) is neither disease specific, nor illness based, but is based on a particular cognitive-behavioural approach to human experience and behaviour. Whilst the detailed examination of this model and the predictions it makes about human behaviour following challenges to body image are undertaken in Chapters 3 and 8, its basic tenets can be summarised as follows:

• the model is based on cognitive and conditioning accounts of human experience and behaviour

• the model attempts to differentiate between those who experience difficulty and those who do not following challenges to body image

• the model attempts to predict what interventions might be helpful.

This approach was principally developed with people who have experienced a facial disfigurement (Newell 1999), regardless of diagnosis. It is suggested here that the approach has wider application, and a considerable number of suggestions about such application will be made in this book. Moreover, similar approaches have proved robust across a number of client difficulties, from phobias (Marks 1987) to chronic pain states (Lethem et al. 1983; Rose et al. 1992).

However, the major focus of this book will be upon disfigurement in general, and facial disfigurement in particular. There are many threats to body image which arenot visible, such as loss or damage to internal body organs or the intrusion of artificial or transplanted body parts. Disfigurement, however, possesses particular characteristics which make it especially useful for a consideration of body image. Firstly, there is no reason to suppose that all the elements of threat to body image which are present in non-visible bodily changes are not also present in visible ones. For example, we have no reason to suppose that reactions to a visible prosthetic will be less far-reaching than those to an invisible one. Indeed, we might suppose the reverse, since the additional characteristic of visibility will be possessed in the former case. This notion of visibility is important, since it bears on stigma. Stigmata were originallyvisible marks of slavery by which an enslaved person’s status was known to others. Goffman (1963) draws the distinction between discredited and discreditable stigmatised people. Discredited persons are unable to hide the attributes which give rise to their stigmatised status, whilst discreditable people would be stigmatised if such attributes were visible, but are able to hide them. In most situations, disfigured people are unable to hide their disfigurements (although, as we shall see in Chapter 7, considerable effort is often put into attempting to do so), and thus may be thought to bear the additional burden of stigma from other people. Focusing on disfigurement allows us to examine the impact of stigma. We shall also examine (in Chapter 3) the possibility that continuing exposure to stigmatising situations may actually be helpful, by promoting adaptation in the manner suggested by Newell (1991) and Dropkin (1989). Finally, disfigured people are, in many ways, the example par excellence of well people who are experiencing a severe challenge to body image, since many (burn survivors, traumatic injury survivors, people with birth defects) have no continuing physical illness. For this reason, we can be relatively confident that, in many cases, the difficulties they experience are the result of body image disturbance, rather than of such factors as fear of ongoing treatment, illness or disability. Moreover, for facially disfigured people, there are often few of the practical difficulties associated with amputations or with the removal of functioning organs, with the sole exception that presentation of the self is mediated to a considerable degree by the face, and such self-presentation is itself an exceedingly important function. Self-presentation, however, is not limited to the face, and the role of self-presentation in adaptation to challenges to body image is examined in Chapter 2.

In summary, then, facial disfigurement is an ideal example to draw upon in our examination of body image and its disturbance, particularly in the context of exploring body image challenges in well people. It is the contention of this text that, if the issues surrounding this example are fully explored by the reader, a considerable amount of generally applicable information can be gained which will be useful in addressing challenges to body image in a wide range of patient groups.

The structure of the book

The fear–avoidance model has its origins in clinical practice, but also in the body of work which precedes it in the area of disfigurement, and in approaches to body image from a mental health and illness perspective. The structure of this book reflects this background, by commencing with an examination in Chapter 2 of several of the major current models of body image disturbance. This chapter also sets the scene for much of the rest of the book by touching on the history of our understanding of body image and on issues of measurement of body image. This material informs much of the content of Chapter 3, which lays out the cognitive-behavioural approach which forms the basis for the therapeutic approach suggested later.

Part 2 begins with, in Chapter 4, a broad examination of stigma, with particular reference to its potential effect on body image disturbance. Stigma is often regarded as crucial in the development of social difficulties amongst disfigured people in particular, and disabled people in general, and has informed many of the empirical studies of social interactions with such individuals. These studies are examined in Chapters 5 and 6. Qualitative research has been of considerable importance in mapping the territory with regard to the experiences of disfigured people, and provides an invaluable insight into these experiences. This work has more recently been complemented by attempts to apply a more structured, generalisable approach to the examination of such experiences, and relevant quantitative studies are examined. In Chapter 6, we turn to attempts to ameliorate the difficulties of disfigured people in particular, once again using facial disfigurement as the critical case example for application to body image disturbance. Selected studies from fields other than facial disfigurement are also examined, in order to complement the examination of studies of disfigured people. In essence, Part 2 provides the empirical research background which informs the fear-avoidance approach.

Part 3 examines this approach more directly and attempts to apply this information to practice. Thus, in Chapter 7, a number of recent attempts (Newell 1998,1999,2000; Newell and Clark 2000; Newell and Marks 2000) to test the model are examined. In each case, the way in which the results of the studies might be said to support the cognitive-behavioural approach is outlined. Chapter 8 attempts to draw conclusions about actual treatment interventions from the rest of the book. The emphasis is placed on the model described in Chapter 3 and the empirical tests outlined in Chapter 7. This final chapter aims both to present the reader with a series of possible strategies to be employed during interventions with people who have suffered a disturbance in body image and also to demonstrate a rationale for the use of such interventions which is, as far as possible given the relatively immature state of the area, based upon evidence.

The future

The elements of this book which relate to the fear–avoidance model and the cognitive-behavioural approach derived from it are under continuing development. As a consequence, this book is, itself, still a work in progress. In Chapter 8, some of the work still to be done with regard both to interventions with disturbed body image in general and to the cognitive-behavioural approach in particular is outlined. It should be noted at the outset, however, that readers of this book are also, I hope, potential contributors to endeavours to offer a focused, evidence-based approach to the difficulties of people who have experienced a change in physical appearance and body image. This book attempts to present an approach which will have general applicability and become evidence based. This evidence base is still in its infancy. Indeed, Francis Macgregor, who has worked in the field of facial disfigurement for nearly 50 years, has repeatedly stressed the need to add to the impoverished research base of this topic. If readers of this book use the tactics offered here, I would welcome hearing about their results. It is essential that interventions with people who have experienced changes in body image are rigorously evaluated. I will also welcome discussion with readers over potential ways to effect such evaluations.

A note on gender: Where no particular gender is implied by the context, the female personal pronoun is used, to reflect the role of women as the greater providers and recipients of health care.

A note on study participation: In general, the term ‘participant’ has come to be favoured over ‘subject’ when describing individuals whose responses are examined as part of a study, even though there is slight inaccuracy here since the researcher is also a study participant. However, this usage is retained in this book for general descriptive purposes. Where specific studies are examined, the term used by the study authors is retained.

Part 1

---

Approaches to body image

---

Chapter 2

---

Elements of body image

---

The need for models of body image

Nursing as an activity is intimately concerned with the body’s appearance and functions, including the most intimate aspects of these appearances and functions. If we consider the activities of caring, a great many of these are concerned either with intimate personal services such as washing, bathing and helping with toileting or with clinical procedures which involve exposing parts of the body which would not normally be exposed in the ordinary social context and intruding upon the body in unusual ways. As nurses, we are given privileged access to patients’ bodies by virtue of our clinical role.

This privileged access carries with it the responsibility of behaving professionally during intimate procedures, since such professional behaviour is necessary to preserve the dignity of the patient. It is, however, far from obvious what we might mean by professional behaviour in this context. At one level, we might think about preserving an appropriately formal distance from the patient, and it is probably clear that we are aware of what breaches of such distance amount to, since they are enshrined in our culture in knockabout film comedy and seaside post cards. However, such distance should not deny the fact that we all have bodies and respond to the bodily appearance and functions of others, often in complex ways. Indeed, there are many situations where the preservation of professional aloofness is clearly antitherapeutic, and probably designed more to protect the nurse from embarrassment or other responses to issues about her own body than to protect the patient from unwanted intrusion outside the relationship of professional privilege.

It is easy to generate examples of where such ‘antitherapeutic’ behaviour may occur. If a nurse is uncomfortable with her own body and with intimate contact with others, we may expect her physical handling to demonstrate elements of that tension. Similarly, if s...

Table of contents

• Cover
• Half Title
• Routledge Essentials for Nurses
• Full Title
• Copyright
• Dedication
• Contents
• List of illustrations
• 1 Introduction
• PART 1 Approaches to body image
• PART 2 Disfigurement and its consequences
• PART 3 Using the cognitive-behavioural approach to disturbed body image
• References
• Author index
• Subject index