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Living with disfigurement

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VOL: 98, ISSUE: 15, PAGE NO: 34

Rob Newell, PhD, BSc, RGN, RMN, RNT, CertBehavPsych, is professor of nursing research, School of Health Studies, University of Bradford

Disfiguring medical and surgical interventions, disease and injury are everyday hazards for patients. Add to this the disfigurement that arises from congenital abnormality and it is easy to see the relevance to nursing practice of understanding disfigurement. Body image is important to our sense of self, so it is not surprising that any alterations can have profound effects on our psychological well-being.

 

Disfiguring medical and surgical interventions, disease and injury are everyday hazards for patients. Add to this the disfigurement that arises from congenital abnormality and it is easy to see the relevance to nursing practice of understanding disfigurement. Body image is important to our sense of self, so it is not surprising that any alterations can have profound effects on our psychological well-being.

 

 

It is perhaps because of this that changes in appearance can present great challenges both for patients and the nurses working with them. Around 390,000 people in the UK are estimated to have a visible difference in their appearance from the accepted norm that causes them significant distress (Martin et al, 1988). In spite of this, there has been little investigation into the issue of disfigurement and little guidance for nurses on how to respond.

 

 

Body image and disfigurement
Body image is central to an examination of disfigurement. Schilder’s (1935) definition of body image is regarded as the earliest attempt to distinguish physical perception of the body and psychological attitudes to it. He defined it as: ‘The picture of our body which we form in our mind, that is to say the way in which our body appears to ourselves.’

 

 

It is principally the attitudes towards body image that will be discussed in this series of two articles when we look at disfigurement and possible nursing roles and interventions. It should be noted, however, that perceptual aspects of body image (for example, phantom phenomena in amputees, overestimation of body size in anorexia nervosa) are also important considerations for nursing practice.

 

 

It is clear that our attitudes towards our bodies and those of others are formed early in life. For example, it has long been recognised that children start to express a preference both for more attractive people and for non-disfigured people between the ages of five and 10 (Rumsey et al, 1986).

 

 

Similarly, attractive and non-disfigured people are favoured throughout life in a wide variety of situations, including dating, marriage, education and employment (Bull and Rumsey, 1988). Finally, testimony by disfigured people suggests that, while we might wish it otherwise, health professionals (including nurses) stigmatise disfigured people (Holmes, 1986).

 

 

In this respect, we are no different from the rest of the population. We know that discrimination against disfigured people extends to almost every facet of life, and that the evidence to support this is extremely resilient, despite an overall lack of research into the area (Newell, 2000a).

 

 

It is well worth considering how you might feel if you were subjected to continual discrimination whenever you entered a public setting. How might you feel if people continually stared at you, passed remarks about your appearance, looked away, avoided sitting near you or speaking to you. All this is commonplace for stigmatised groups and studies which support these findings come from a variety of contexts, from laboratory studies, to field studies and the subjective accounts of disfigured people themselves (Bull and Rumsey, 1988).

 

 

Unfortunately, none of these studies has investigated the behaviour of nurses with disfigured patients. It might be revealing to see how close nurses sit next to disfigured people, how much they look at them and where, and how much they speak to them, and so on.

 

 

Psychosocial problems of disfigured people
Given the level of stigmatisation shown towards disfigured people, it is perhaps unremarkable that they show considerable psychological difficulty, especially in social situations. My own studies in this area (Newell, 2000b) found that entering and interacting in social situations were the most frequently avoided behaviours. It was also clear that this avoidance was associated with disfigured people’s feelings about their facial appearance.

 

 

More generally, there were higher levels of anxiety and depression among a representative group of plastic surgery ex-patients than the general population. Often the levels of anxiety, depression and phobic behaviour reported were sufficiently high to warrant formal treatment by a therapist (Newell and Clarke, 2000).

 

 

Broadly similar difficulties are reported in studies of burns patients and cancer patients who have experienced disfigurement. Although these studies are generally less representative, the general run of results indicates something of a trend: disfigured people experience more psychological difficulty than the general population, and a considerable amount of this is experienced in social situations. These findings bear out the reports of disfigured people themselves, both in the actions of others towards them and their own feelings.

 

 

Two things are remarkable, given the broad range of difficulties described. One is the positive finding that those in difficulty are, in fact, a minority, at least as far as the surveys are concerned. The second is that only a minority of disfigured people report any meaningful contact with any health professionals regarding their disfigurement. The level of provision of psychological care following disfigurement is unknown but anecdotal evidence and one small survey suggest it is very low (Wallace, 1988).

 

 

Probably the best known first-hand accounts in this field come from James Partridge (1993), a burns survivor, whose founding of the self-help group Changing Faces perhaps offers the best chance of improving the lot of disfigured people through education, treatment and lobbying. His ‘scared framework’ (Box 1) is a useful way of understanding the behaviours and feelings of both disfigured people and those who come into contact with them.

 

 

A cognitive-behavioural approach
Partridge’s model is principally concerned with social behaviour, and the role of fear appears implicit in many of the components of the scared framework. The finding that disfigured people often experience extreme discomfort in social situations and consequently avoid them suggests a role for a cognitive-behavioural approach (Newell, 1999). This type of therapy is widely regarded as the treatment of choice in social difficulties of this kind.

 

 

A cognitive-behavioural approach seeks to offer a model for the experiences and behaviour of disfigured people, and is based on the notions of fear and avoidance as a consequence of the person’s psychosocial milieu and as major components of ability to cope following disfigurement (Fig 1).

 

 

It is worth stressing that, as far as we know, the majority of disfigured people cope very well, despite the appalling behaviour of many people towards them. The fear-avoidance model seeks to offer a rationale for why it is that some people cope admirably while others clearly experience great difficulties.

 

 

The model, which essentially follows Lethem et al’s (1983) fear-avoidance model of exaggerated pain perception, argues that the psychosocial context of disfigurement is created by a combination of fear of the changed body and the perceptions of others, the history of changes to body image, life events, personality factors and personal coping strategies. This context gives rise to a tendency to avoid or confront anxiety associated with the changed body. In cognitive-behavioural therapy, we have good evidence that, in phobias, continuing avoidance of, and escape from, anxiety-provoking situations leads to increased fear and, ultimately, increased life handicap.

 

 

For example, in social phobia, a person who experiences anxiety speaking in social situations and deals with this anxiety by speaking less in such settings is likely to become more fearful and is more likely to want to avoid similar situations in future. By contrast, someone who experiences such anxiety but confronts it by making sure they speak finds that the anxiety decreases.

 

 

These experiences are not confined to psychological disorders such as phobias. We can all remember situations (job interviews, speaking up in class, giving a talk to work colleagues) when we have felt anxious but where, as we perform the activity more, the anxiety decreases. This is precisely how the fear-avoidance model seeks to explain how some people with disfigurement experience more psychological difficulty than others.

 

 

How to respond
As the second article explains (April 16), the model has practical implications for the way we might help disfigured people to cope with the changes in body image that arise from disfigurement. For example, the model attempts to predict the sorts of behaviours that will lead to problems and how we as nurses might respond, at the level of primary and secondary prevention and in terms of intervention by generalist and specialist nurses.

 

 

The notion of patient self-help is crucial to both the fear-avoidance model and helping the large numbers of people who experience psychological difficulty after disfigurement. We will look at how nurses might facilitate this self-help and next week’s article will examine what support exists for the fear-avoidance model, and how nurses can become involved with implementing interventions derived from it.

 

 

The second article in this two-part series will be published next week.

 

 

- For further information contact Changing Faces, 1-2 Junction Mews, London W2 1PN; tel: 020 7706 4232; e-mail: info@changingfaces.co.uk

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