Body Image 1 (2004) 8397

Body image and disgurement: issues and interventions

Nichola Rumsey , Diana Harcourt
Centre for Appearance Research, University of the West of England, St. Matthias Campus, Oldbury Court Road, Fishponds, Bristol BS16 2JP, UK Received 26 June 2003; received in revised form 11 July 2003; accepted 11 July 2003

Abstract Whether present at birth, congenital or acquired later in life, a visible disgurement can have a profound psychological impact upon the individual concerned. Difculties include adverse effects on body image, quality of life, and self-esteem. In addition, social encounters can present many challenges, however many individuals adapt to the demands placed upon them and appear relatively unaffected by their visible difference. This article reviews current literature exploring the psychosocial implications of living with a visible difference and considers the complex inuence of physical, cultural, and psychosocial factors on adjustment. Attempts that have been made to theorise individuals experiences, relevant interventions and care provision are then examined and the challenges facing researchers in this area are outlined. 2003 Elsevier B.V. All rights reserved.
Keywords: Disgurement; Appearance; Body image; Visible difference

Dening Disgurement Concerns about physical appearance affect a sizeable proportion of the general population (Gilbert & Thompson, 2002). Some concerns relate to inherited characteristics, for example, body shape, facial features. In addition, during a life course, changes to outward appearance occursome of which are desired, while others are not (Newell, 2000). Throughout our lives, the majority of us strive to manipulate the way we look in some way, in order to present ourselves in the best possible light. In doing so, we acknowledge implicitly that our physical appearance contributes to

Corresponding author. E-mail address: nichola.rumsey@uwe.ac.uk (N. Rumsey).

the impressions others form of us, even if we also accept that these impressions can be modied through subsequent contact. What are the implications of these processes for those who have a visible difference that sets them apart from the norm, and which may lead to them being a focus of unwanted attention? What are the concerns and difculties they encounter? In the light of the pervasive emphasis in current society on the body beautiful, we might intuitively suppose that the concerns would be signicantly greater or different than for those whose appearance falls within the normal continuum. Macgregor (1979) argued that a visible difference comprises a social disability, since in addition to impacting on the thoughts, feelings and behaviours of those affected, it is also likely to

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be noticed by other people. However, recent research suggests that the extent to which a visible difference results in social disability involves a complex interplay of social and individual factors. In addition, the spectrum of emotions, thoughts, and behaviours characteristic of people with visible differences has many similarities to those experienced by persons who are dissatised with aspects of their ostensibly normal looks (Rumsey, 2002a, 2002b). Drawing the boundary around what does and does not constitute a disgurement is far from straightforward. The similarities in the experience of those who perceive themselves or are perceived by others as different can make this task somewhat arbitrary. The work of our research group focuses on those whose appearance concerns are not complicated by a recognised psychiatric condition (for example, an eating disorder or body dysmorphic disorder) or by a physical disability. In addition, we also focus on body image concerns relating to differences that are visible to others. The research areas included in this review are dened later. This is followed by an overview of the problems experienced by those affected, a summary of the factors which have been identied as exacerbating or ameliorating these difculties, and an examination of the particular pressures associated with different developmental stages. Finally, the article examines the potential of a variety of interventions and concludes with a discussion of the numerous challenges faced by researchers in this area. Amongst those who research and practice in the area of disgurement, much agonising has taken place concerning the most appropriate language to describe a visible difference. The terminology used to date has a predominantly negative focus (for example, disgurement, abnormality, deformity, defect, etc.), derived from the biomedical approach to care and its problem-focused, pathologising emphasis in treating presenting conditions. There is now a groundswell of opinion (see, for example, Eiserman, 2001; Strauss, 2001) that negative terminology is at best unhelpful, and at worst exacerbates the difculties experienced by those seeking help. Some writers and researchers have striven to compensate for the prevailing negative focus by using terminology such as visible distinctionhowever this approach has not met with universal approval amongst those affected (especially those experiencing particular difculties), and does

not have the advantage of evoking the current shared understanding triggered by the word disgurement. We have chosen the middle ground and where possible have used terminology which is less negatively framed, but hopefully still widely understood (i.e. by replacing disgurement with difference where appropriate). In addition, we have chosen to include recent research on the more positive aspects of being visibly different in addition to reviewing the bulk of the literature focusing on the associated problems. The causes of visible difference The charity Changing Faces estimates that around 400,000 people in the UK have some kind of visible difference (Changing Faces, 2001). However, these estimates are based on 1988 population census gures, and are vague at best. The exact gures are unknown and current estimates are likely to be conservative. Visible differences result from a surprisingly wide variety of congenital anomalies, illnesses, injuries, or surgical interventions. Congenital disgurements include visibly disguring conditions that are fully manifested at birth (e.g. a cleft of the lip), whereas others become more evident over time (e.g. neurobromatosis). Harris (1997) proposed that the classication of a congenital disgurement should be those that manifest pre-memory, i.e. that the person has no memory of life without the abnormality. Head and neck malformations are the most common visible birth anomaly. A cleft (or gap) in the lip and/or palate occurs in approximately one in every 800 births, and can manifest on one (unilateral) or both (bilateral) sides of the midline of the face. Other less common anomalies result from the failure of the face to develop fully, as in the absence of an ear, the under-development of cheek and jaw bones (as in Treacher-Collins syndrome), or the early fusion of the cranial bones (as in Cruzons and Aperts syndromes). Most facial anomalies are not associated with decits in brain function; however, some are linked with a combination of physical features and learning difculties (e.g. Downs syndrome). Harris (1997) has summarised additional anomalies associated with the delayed maturation of blood vessels (e.g. cutaneous haemangiamata), including those vascular malformations (e.g. birthmarks), or from the failure of a limb to develop. Webbing or

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syndactyly refers to the failure of ngers or toes to separate fully, whereas in polydactyly, an extra digit is present on the hand or foot. Acquired disgurements include those caused by trauma (e.g. trafc accidents, burns), surgical intervention (e.g. treatment for head and neck cancer), disease (e.g. acne and subsequent scarring), genetic predispositions to abnormalities that manifest in later life (e.g. vitiligo), or the absence of normal developmental processes (e.g. asymmetric breast development).

What are the issues/problems encountered by persons with visible differences? The evaluation of body image concerns in people with disguring conditions appears daunting in view of the many different types and body sites, the variability in severity and visibility, and the numerous personal, social, and situational characteristics that contribute to body image and adjustment (Rumsey, 2002a, 2002b). However, despite the complexity of variables involved, there is a remarkable consensus concerning the problems and difculties reported. The difculties most frequently reported by people who are visibly different relate to negative self-perceptions and difculties with social interaction. These problems frequently involve spirals of negative emotions (e.g. social anxiety), maladaptive thought processes (e.g. fear of negative social evaluation), unfavourable self-perceptions (for example, lowered self-esteem and unfavourable body image), and negative behaviour patterns (for example, excessive social avoidance). Visible differences and views of the self Grogan (1999), Harter (1999), and others have documented the close relationship between appearance and self-concept in the general population. The interdependence of these constructs for people with visible differences has been supported by a range of studies (Kent & Thompson, 2002). Further illustrations are provided by the vivid personal accounts of self-doubt and low levels of self-esteem engendered as the result of social encounters: the cruellest legacy of my acne

is the profound conviction that Im different to others, that I am unworthy, that I can never hope for ordinary happiness . . . anyone meeting me for the rst time must be lled with repugnance and pity. (Richardson, in Lansdown, Rumsey, Bradbury, Carr, & Partridge, 1997, p. 61). Much of the available research evidence conrms that a visible disgurement leads to lowered self-condence and negative self-image across the lifespan. Turner, Thomas, Dowell, Rumsey, and Sandy (1997) found that 73% of their sample of 15- and 20-year-olds felt their self-condence had been very much affected by their cleft. Millard and Richman (2001) reported that cleft-affected children are more at risk than their non-cleft peers for elevated anxiety, general unhappiness, and self-doubt in relation to interpersonal relationships. Disturbingly, Herskind, Christensen, Juel, and Fogh-Anderson (1993) reported a doubled suicide rate amongst Danish adults with clefts. However, the research ndings are not entirely clear-cut. Walters (1997) reviewed several studies reporting levels of self-esteem equal to, or in some cases, higher for disgured children than non-affected peers. Visible differences and social processes A visible difference can affect social interaction in many ways that result in feelings of diminished control over encounters with others. Robinson (1997) documents the reported difculties relating to meeting new people, making new friends, and the resulting concerns about developing longer term relationships. Accounts of staring, audible comments, unsolicited questions about the nature and cause of the difference, together with other negative or avoidant behaviours by members of the general population are frequent (Rumsey, 2002a, 2002b). Reports of teasing are common. Turner et al. (1997) reported that 60% of their cleft-affected sample reported being teased about their condition, with 25% reporting that this worried them a lot. Macgregor (1979) described the unwelcome attention and the consequent lack of anonymity in a crowd as visual or verbal assaults. Explanations for the behaviour of others have been many and various, and have included beliefs in a just world (the person with a visible difference must have deserved their fate, and can therefore be derogated

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or avoided), an evolutionary aversion to anything other than perfect, and the desire to avoid anything that might be contagious (see Rumsey, 1997, for a review). These explanations are clearly simplistic, and the weight of evidence suggests that the responses of others are affected by a combination of factors, including initial stereotyping on the basis of appearance during the impression formation stage of an encounter, an uncertainty about how to behave due to a lack of previous experience, and the desire to minimise potential embarrassment to oneself, or the person with a difference. Social encounters may also be thrown off-kiltre by the behaviour of the person with the visible difference. Unconventional non-verbal and or verbal communication may result from an inability to use facial musculature in usual ways (for example, as the result of a facial palsy or Moebious syndrome which inhibits the facial expression of emotion). Many facial differences lead to difculty in reading the faces of disgured people, which in turn results in hesitancy, awkwardness and an abbreviated interchange (Macgregor, 1989). Negative experiences in social situations can lead to an understandable preoccupation with appearance in anticipation of further negative reactions. Macgregor (1979) talked of those affected being acutely aware of the reactions of others, and expending much energy attending to these reactions, becoming excessively preoccupied with their appearance and the effect it has on others. The result is a less than optimal interaction style, ranging from shy to aggressive, or often, excessive social avoidance. In summary, a visible disgurement appears to present a variety of problems and difculties for those affected. The questions remain, how prevalent is psychological distress in this population and what form does distress take? Newell (2000) found that psychological disturbance in plastic surgery patients as measured by the General Health Questionnaire and the Hospital Anxiety and Depression Scale was greater in facially disgured people than in the general population. Rumsey, Clarke, and Musa (2002) found levels of anxiety, depression, social anxiety, social avoidance, and quality of life were unfavourable compared to published norms in a third to a half of a population of 650 consecutive outpatients attending for a variety of disguring conditions.

Factors exacerbating or ameliorating distress Whilst the literature suggests that people with visible differences are more at risk for body image concerns, low self-esteem and social interaction problems, not all are equally affected. It is clear that some individuals nd ways of coping effectively and relegate their difference to a minor role (Rumsey, 2002a, 2002b), with some even using it to good advantage. Recently, attention has focused on those attributes which appear to buffer a person against the stresses and strains of living with a visible difference. Researchers taking this approach concentrate on strengths and resilience as opposed to decits and problems amongst people with disgurements. In a series of telephone interviews with 18 people with facial paralysis, Meyerson (2001) identied family support, faith, humour, sense of self, social skills, determination and networking as inuencing resilience. Seventy percent of respondents to a survey of members of the Cleft Lip and Palate Association in the UK reported positive consequences of having a cleft lip and/or palate (Cochrane & Slade, 1999). Further research is needed to clarify whether resilience is best understood as a personality trait or a coping strategy and how interventions might facilitate its development. The physical characteristics of the difference Contrary to the expectations of the lay public and many health care providers, the bulk of research, clinical experience, and personal accounts demonstrate that the extent, type and severity of a disgurement consistently fail to predict adjustment (Rumsey, 2002a, 2002b). A persons subjective perception of how noticeable their difference is to others is a better predictor of psychological and body image disturbance than is the assessment of a dispassionate observer or clinician (Harris, 1997). However, the visibility of a difference can be an additional stressor. If large areas of the face are affected, the disgurement is likely to be immediately obvious in most social encounters. Other conditions, such as an injury to a hand, are less immediately obvious and will be apparent in fewer situations. Some differences are amenable to camouage using make-up, prosthetics, clothes or hair. However, for some, camouage can bring its own problems in relation to issues of identity (are people responding

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to the real me?), over-reliance on the camouaged image in social interaction, and fears that the truth will be discovered (Coughlan & Clarke, 2002). Macgregor (1979) and others have noted that mild disgurements can cause as much, if not more, anxiety than highly visible conditions. Lansdown et al. (1997) suggest that less extreme differences may engender greater variability in the reactions of others, and this unpredictability contributes to lack of control, resulting in raised anxiety levels. People with obvious disguration are likely to experience negative reactions more consistently than those with a less noticeable difference, enabling them to develop more consistent and effective ways of coping. The interesting issue of the impact on body image and adjustment of additional appearance-related factors over and above the visible difference remains to be explored. Does a disgurement impact more on someone who is physically attractive to others than someone who is not? Starr (1980) found no differences in a sample of patients affected by a cleft; however the study suffered from various methodological weaknesses (Newell, 2000). Intuitively, appearance factors do play a part in the equation, but this supposition needs further exploration. Debate continues in the literature concerning the role of the aetiology of the visible difference in body image distress and psychosocial adjustment. Newell (2000) provides a useful review and methodological critique of relevant studies and reports less disturbance amongst people disgured from birth and those disgured from accidental injury compared with persons affected by skin conditions or with disguration from surgery. More research is needed, but in the meantime, generalisations based on broad aetiological categories have limited utility and should be resisted. Newell (2000) has pointed out, that those with a difference from birth will have had more opportunity to incorporate their anomaly into their body image, to habituate to the responses of others, and to acquire effective coping strategies. However, the picture is more complex than this as some congenital conditions are progressively more disguring over the lifecourse (e.g. vitiligo), whereas other conditions, although apparent at birth, are less obvious following surgical correction (e.g. cleft lip). In addition, broad categorisations such as skin conditions may mask important dif-

ferences in specic conditions. Porter, Beuf, Lerner, and Norlund (1986) compared two groups of people with skin conditions, vitiligo and psoriasis, with a control group. Both condition groups had lower self-esteem than controls, but those with psoriasis reported more prejudice, including being stared at and discrimination in the workplace. They also scored more poorly on adjustment to the disorder. The researchers speculated that the increased visibility of psoriasis accounts for this variation. Fluctuating conditions such as psoriasis may present particular difculties in terms of the unpredictability of occurrence and in the resulting reactions of others. It may also be that the sometimes raw and scaly appearance of psoriasis is more aversive than the depigmentation of vitiligo. People who acquire a disgurement later in life have to deal with their reactions to the circumstances surrounding the onset (e.g. trauma, disease), to the loss of their previous looks and to changes to their body image (Bradbury, 1997). Those disgured by treatment for a life threatening condition such as cancer may suppress their appearance-related concerns during efforts to conquer the disease. In the case of head and neck cancer, patients may also face post-surgical difculties related to eating and speaking, all of which can exacerbate appearance-related concerns. Sociocultural factors Another challenge for researchers in this area is to account for differences in body image and adjustment due to factors such as race, culture, gender, social class, and age. Strauss (1985) for example, noted that in Israel, differences between western Jews, oriental Jews, and Arabs exist in their explanations of the origins of birth defects, and their approaches to rehabilitation and community integration. However, the nuances of cultural and social differences in responses to visible birth anomalies and acquired differences remain largely uninvestigated. Many writers have pointed to the role played by the media in creating and exacerbating the pressures on those distressed by their appearance (see Rumsey, 1997). The pressure caused by the barrage of images of beautiful people, programmes and articles which encourage us to critically evaluate our appearance

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and to correct the faults may be more keenly felt by those who have little hope of conforming to the unrealistic norms manufactured by the media. Ironically, a prime culprit is advertising by plastic surgery clinics, in which the desired end product of surgery is portrayed using images of all-too-perfect models photographed using soft-focus lenses. Findings relating to gender effects on the body image concerns of people with visible differences are mixed. Many writers have assumed that females suffer greater psychological disturbance, as the result of greater emphasis placed on female appearance by society (Andreasen & Norris, 1972). Carr, Harris, and James (2000) for example, report that levels of appearance-related distress and social avoidance are higher in women who are awaiting cosmetic surgical procedures and also in general population groups. Other studies have shown no gender differences (White, 1982). Turner et al. (1997) found that problems warranting psychological referral were more common in male cleft-affected children and adolescents (69%) than in females (42%). In addition, men have been found to be less likely to use camouage on their disgurement (Lanigan & Cotterill, 1989). A study by Brown, Roberts, Browne, Byrne, Love, and Streiner (1988) involving 260 burn-affected individuals hinted at the complexity of variables involved in adjustment, and the role of gender. Low functional disability, more recreational activities, greater social support, less avoidant coping, and more problem solving accounted for 55% of the variance. In men the most powerful predictor of adjustment was less functional disability, while for women, it was the use of problem solving coping. Coping styles Adaptive and maladaptive coping styles have been investigated in relation to the body image concerns and adjustment of people with disgurements, though much of the evidence is anecdotal (see Moss, 1997). Until recently, it has been assumed that denial or an avoidant coping style is inadvisable, as fear of the particular situation is exacerbated and the development of more effective strategies postponed. However, Robinson, Rumsey, and Partridge (1996) and others have suggested that rather than focusing on supposedly maladaptive coping strategies, interventions should fo-

cus on broadening the range of skills in a persons repertoire, thus increasing the exibility with which people can respond to the varied and often unpredictable demands of social situations. Social interaction skills As many difculties relate to the intricacies of social interaction, the social behaviour of those affected has been the focus of much research. Newell (2000) reported that people with facial disgurements reported similar levels of socially phobic and agoraphobic avoidance to socially phobic patients, and higher levels of social avoidance and lower levels of agoraphobic avoidance than agoraphobic patients. Persuasive arguments have been put forward that good social skills result in more positive experiences of social interaction and in better adjustment amongst disgured populations (Bull & Rumsey, 1988; Macgregor, 1979). Researchers have also demonstrated the benecial effects of social interaction skills training for people with visible differences (Kapp-Simon, 1995; Robinson et al., 1996; Rumsey, Bull, & Gahagen, 1986). However the cognitive processes linking self-image, beliefs about impressions formed by others and the reactions of others are complex and remain to be fully explored. The family environment and social support The role of social support has been widely acknowledged as a buffer of the consequences of stress. Unfortunately, the social avoidance and withdrawal that are common reactions to disgurement can result in a smaller network of support for those affected. Personal accounts testify to feeling at ease with familiar others, who are perceived as seeing through supercial appearances to the real person beneath (see Lansdown et al., 1997). Partners and families are likely to be the main provider of support, yet they themselves may be trying to deal with their own reactions and distress surrounding the disgurement. Baker (1992) found positive social support improved rehabilitation outcomes for head and neck cancer patients 6 months after treatment. The benets of support from family, friends and peers for those affected by burns have also been reported (Blakeney, Portman, & Rutan, 1990; Browne et al., 1985; Orr, Reznikoff, & Smith, 1989).

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Factors linked to developmental stages Lansdown, Lloyd, and Hunter (1991) have characterised a visible difference as an underlying stressor throughout the lifespan, which may exacerbate the pressures associated with the various developmental stages. Transitional periods including changing schools, jobs, or neighbourhoods can be particularly challenging for individuals with a visible disgurement (Bradbury, 1997). Considerable effort is required to leave support systems for the relative unknown. New strategies must be developed for dealing with the reactions of unfamiliar others, and considerable initiative is required to progress beyond initial encounters to form new relationships. The birth of an infant with a visible difference can present new parents with unexpected emotions, reactions, and challenges that may adversely affect the initial bonding process (Walters, 1997). In some cases, the facial expressions of the infant may be affected, and caregivers may nd it hard to respond appropriately. Although some mothers may hold and stimulate their infants less than mothers of normal babies, attachment is by no means always affected. By the end of the rst year, the weight of evidence supports the existence of normal patterns of attachment for most babies and their parents (Speltz, Endriga, Fisher, & Mason, 1997). Parents feelings about their childs appearance are likely to be transmitted and then assimilated by the child, inuencing the affected childs perception of his or her disgurement the emerging body image and feelings of self-worth (Kearney-Cooke, 2002). Families vary considerably in their strategies for dealing with a physical difference. Some discuss it openly; others may act as if it does not exist (for example, see Storrys account in Lansdown et al., 1997). Parents may be over-protective and in turn, children may not want to raise issues related to their appearance for fear of upsetting their parents (Bradbury, 1997). Most children are teased during the course of their school career, and those with a visible difference often experience appearance-related teasing and bullying (Turner et al., 1997). Gilbert and Thompson (2002) have argued convincingly for a link between appearance-related teasing, body dissatisfaction and general psychological disturbance. Siblings may also become the focus of this unwanted attention or may

be questioned about their affected brother or sisters appearance (Bradbury, 1997). Treatment decisions made during childhood, adolescence and adulthood can be stressful. Deciding whether or not to undergo appearance-altering surgery may not be straightforward, and those affected can question their own motivation and that of others for putting themselves through the associated stress (Hearst & Middleton, 1997). Hopes and aspirations of outcomes may be unrealistic, and can lead to disappointment when the reality of the aesthetic result becomes apparent. The physical and psychological changes associated with adolescence increase the focus on physical appearance for the majority of adolescents, and having a visible disgurement during this period may present particular challenges. Image counts in the dating game, and joining an acceptable social grouping can be difcult if social condence has been in some way eroded. Harter (1999) reported that teenagers who believed their appearance determined their self-worth had lower self-esteem and greater depression than adolescents who believed their self-worth determined their feelings about their appearance. This effect may be magnied for those with a visible difference. In a comparison of adolescents who had undergone cancer treatment with age- and gender-matched controls, Pendley, Dahlquist, and Dreyer (1997) found that those who perceived their cancer to have affected their appearance reported higher levels of social anxiety and loneliness. In adulthood, personal accounts refer to difculties nding the desired type of employment (Lansdown et al., 1997), particularly in roles that involve high levels of social visibility. Responses to these difculties vary, with some deliberately choosing a low prole career, and others not seeking advancement (Bradbury, 1997). In the UK, the Disability Discrimination Act now precludes employers from discriminating against their employees because of their appearance. Social difculties may persist into adulthood. Establishing relationships can be perceived as problematic for people who are uncomfortable about their appearance. In addition, once a relationship has been established, concerns about the visible difference may cause ongoing difculties, for example in relation to intimacy. These problems usually relate more to the affected person than the partner (Bradbury, 1997). The issue of whether or not to have children may be

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problematic for those with a genetic predisposition for a visible anomaly. For non-disgured people, middle and later adulthood can bring stability to body image and selfesteem, resulting from a reduced reliance on physical appearance and on the opinions of others. Spicer (2002) found that a small proportion of older adults with visible skin conditions reported high levels of concern, yet many still experienced signicant distress. These processes may also apply to older people with visible differences, but research evidence concerning this effect is limited. Advancing age may bring with it a number of unique problems in dealing with the practicalities of a disgurement or changed appearance (Harrison & Maguire, 1995). For example, conditions such as arthritis may compound any difculties in cleaning or using prosthetic devices, and sagging skin may make abnormality more noticeable. Overall, this consideration of the role of various psychosocial factors in the body image concerns of people with visible differences suggests that expecting a relationship between any one variable and adjustment is too simplistic. Future research needs to be multivariate as opposed to focused on the role of a single variable.

How can the psychosocial impact of disgurement be explained? A variety of approaches have been used to explain peoples experiences of living with a visible difference. The extent to which body image is dened and included in these frameworks varies considerablyin some instances the construct is used as an antecedent, in others it is included as a process variable and others as an outcome. Some researchers have adapted frameworks from other contexts. Dropkin (1989), for example, used Lazaruss model of stress and coping to explain post-operative recovery and adjustment to body image changes following surgery for head and neck cancer. Successful adaptation required individuals to change their personal value system and to place less reliance upon appearance. Heason (2003) explored the relevance of perspectives on stigma (Goffman, 1963), shame (Gilbert, 2002), and social exclusion (Leary, 1990). She concluded that they may all have

a role to play in explaining individuals experiences of disgurement. Other writers (Kent, 2000; Newell, 2000) have criticised the lack of theoretical frameworks developed exclusively for this purpose and in recent years a number of disgurement-specic models have been proposed. Newell (2000) adapted ideas originally proposed by Lethem, Slade, Troup, and Bentley (1983) regarding dealing with chronic pain. Newell and Marks (2000) suggest that many of the psychological difculties of people experiencing threats to their body image are similar to those suffered by people with social phobia. Newell proposes a continuum of confrontational and avoidant responses, with confrontation presumed to be more adaptive, and avoidance contributing to further disability and handicap. Avoidance is deemed to be prompted by fear and anticipation of a negative outcome and leads to the individual engaging in an increasingly restricted range of activities, with ever more innocuous situations determined as threatening. Newell therefore conceptualises fear and avoidance as possible mediators in disturbed body image. His model offers a feasible explanation for social avoidance grounded in a cognitive-behavioural approach. Kents (2002) model is also based on cognitivebehavioural principles. Appearance anxiety is thought to result from perceived stigma caused by social norms. This anxiety increases when an individual is confronted by what is termed a triggering event (e.g. being invited to a social event in which their disgurement might be on show), leading them to employ two ways of coping aimed at reducing their anxiety (specically, avoidance and concealment). Yet again these strategies only reduce anxiety in the short-term and in the longer term serve to reinforce appearance anxiety. This model explicitly acknowledges the role of social norms and it is dynamic, with a series of feedback loops connecting the various factors involved. However, persons are likely to engage in a wider range of coping strategies than is included in this model, and a triggering event is not essentialit may be the threat (anticipation) of a triggering event rather than the event itself that raises anxiety (Heason, 2003). White (2000) also drew upon cognitive behavioural principles to develop a model of body image amongst people treated for cancer. His model proposes that psychological distress, negative thoughts,

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and maladaptive coping strategies are more evident amongst patients who place greater importance on their appearance and whose cancer is affecting a particularly valued part of the body. The success and utility of the models developed to date are limited, as they all require further testing and renement. New researchers to the area may nd them helpful; however, we must not allow models to constrain our thinking, blind us to new ideas and to the complexities of the relationships among the various factors involved.

Interventions and provision of care The pressures leading a person with a visible difference to seek some kind of professional help come from a variety of sources and may be driven by a combination of personal beliefs, coercion from family, peers, the media, or societal context. Interventions and provision of care in relation to disgurement can usefully be classied as biomedical, psychosocial, or educational. Biomedical approaches Current systems of care are predominantly based on the biomedical model and implicitly subscribe to the unsupported notion of a positive correlation between severity of disgurement and psychological distress (Clarke, 1999). Nevertheless, normalising appearance can clearly offer benets and the successes of medical and surgical interventions should not be underestimated. However, these interventions are not a panacea. Hughes (1998) reviewed the effects of surgery for patients with congenital disgurements, and whilst most reported enhanced self-esteem, more positive appearance ratings, and/or improvements in social condence following surgery, the results were not clear-cut. Sarwer (2002) concluded that cosmetic surgery results in decreased distress about a particular feature, but does not change overall body image. Pruzinsky (2002) reported that the effects of reconstructive surgery on body image are complex, involving physical, psychological, and social variables. In subscribing to the biomedical view of a simple relationship between appearance and adjustment, care providers are colluding with the myth that quality of life necessarily improves

when physical appearance is enhanced. In so doing, professionals further increase the pressure on those affected to undergo any available treatment that might improve their looks. For some people, one operation may sufce but many undergo multiple surgeries in the quest for a normal appearance. The question of when to stop can be complex. Patients and clinicians understandings of improvement and their expectations of treatment may differ fundamentally. Complete eradication of a visible disgurement is rare, and there is usually some residual deformity or scarring. Whilst a surgeon might continue to aspire to an ideal aesthetic result, many people with a visible disgurement want to be unremarkable rather than perfect and may need to call a halt to the disruption of surgery and the associated roller coaster of emotions (Bradbury & Middleton, 1997; Pruzinsky, 2002). Given the multifaceted nature of adjustment, the prevailing biomedical model of care needs to be expanded to offer psychosocial support and intervention as routine adjuncts or alternatives to appearance-enhancing treatment (Hearst & Middleton, 1997; Rumsey, 2002a, 2002b). Slavish adherence to rigid surgical protocols (e.g. the expectation that cleft-affected patients will undergo jaw surgery in early adolescence) can be unhelpful, exerting undue pressure to undergo a prescribed surgical intervention. This can make it difcult for those affected to participate in decision making. Rather than imposing inexible regimes of care, interventions need to be carefully planned to take account of individual physical (e.g. growth) and social issues. Although there is no doubt that many clinicians and care teams are aware of the problems their patients encounter on a daily basis (Hearst & Middleton, 1997), many are unsure how best to meet their patients needs and do not feel sufciently skilled to deal with psychosocial issues (Clarke & Cooper, 2001). Yet improved psychosocial support could be offered in many ways (see Rumsey et al., 2002). An ethos of care needs to be developed in which appearance concerns can be discussed and the patient does not feel stigmatised by the offer of psychological support to deal with body image issues. Indeed, failure to create a rapport in which such issues can be discussed might result in patients being reticent to discuss their concerns for fear of appearing vain or wasting professionals time (Hopwood & Maguire, 1988).

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We advocate a normalising rather than a pathologising, problem-focused approach to care and interventions. The patient should be treated as a normal person who happens to have a disguring condition. This requires care providers to reect on their own practice, underlying beliefs, and attitudes towards disgurement. Patients should be discouraged from putting their life on hold whilst waiting for a miracle cure, and providers should avoid reinforcing appearance-related myths and assumptions about the personal impact of disgurement for any particular individual. Professionals may have to curb their enthusiasm to intervene with established or innovative treatment, and should avoid second guessing patients treatment preferences (Lockhart, 1999). The vocabulary used by care providers may unwittingly increase the pressure on patients to undergo a procedure (e.g. the desirability of correcting a disgurement or deformity). They should also be aware that power issues within the doctor/patient relationship may be especially pertinent when dealing with the sensitive and emotive topics of body image and disgurement (Mouradian, 2001). Psychosocial approaches Despite a consensus that disgurement is associated with psychological distress, relevant support and interventions are not routinely available and most existing psychosocial care is reactive rather than preventive. Some multi-disciplinary teams have access to referral routes to psychologists or psychiatrists but, waiting lists are often long. However, there are many ways in which psychosocial needs might be met more effectively by clinic teams. Routine care should include an assessment of levels of psychosocial distress. Rumsey et al. (2002) suggest some simple questions through which patients concerns can be explored. Ways of identifying patients who require specialist support need to be established in the form of clear protocols for referrals to a clinical psychologist with expertise in disgurement. Decision making Prior to any treatment, care providers should promote patient involvement in all choices, including the type and timing of intervention. Staff need to

be condent in facilitating patient decision making, whilst at the same time recognising that not all patients want this responsibility and some may prefer to leave choices to their surgeon (Harcourt, 2001). Decision-making can be especially stressful for patients when the aesthetic outcome is uncertain and if there are multiple treatment options available. Following treatment, reactions to the correction of an abnormality may not be universally positive. Those accustomed to their difference will have incorporated it into their self-image, and may feel the altered appearance is not the real me. For example, Storry (1997) (in Lansdown et al., 1997) describes his anger and despair when his much anticipated surgery left him feeling that he had lost much of my life (p. 36). Decisions about any further intervention must be made in consultation between the patient and care providers, as the stress of further surgery might conict with the patients need to accept a less than perfect outcome. Information, support, and education Although it is obvious that people who have a visible difference need accurate and relevant information that meets their current and evolving needs, they are not a homogenous group with uniform requirements. Condition-specic self-help groups can be very useful sources of support and information about both physical aspects and appearance concerns. Although clearly helpful for some, others avoid them because they prefer not to dene themselves as a member of a group perceived as stigmatised in some way. Some groups are organized by those affected, whilst others are professionally led. It is important to note that groups led by those without appropriate training may too often focus on the reporting of negative experiences, whereas group members may nd an unaffected facilitator lacks an appreciation of the reality of living with a disgurement. Until recently groups have not been the subject of systematic research and the most effective aims, structure and activities remain unclear. Kleve and Robinson (1999) reported that professionally led groups and individual counselling were the preferred sources of support amongst 71 burn-injured adults. Changing Faces (www.changingfaces.co.uk) has considerable experience in offering advice and relevant resources (including booklets, videos, class-

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room, and work-based activities) to self-referred individuals, families and relevant agencies. Kish and Lansdown (2000) outlined the Changing Faces programme for children and adolescents with visible differences, promoting emotional support (e.g. encouragement to express feelings openly), cognitive strategies (e.g. to promote a positive self-image), and techniques designed to promote adaptive behaviour (e.g. social interaction skills training). Clarke (1999) has also summarised the organisations approach for adults. Changing Faces has produced classroom-based activities and strategies for school assemblies. Lovegrove (2002) evaluated a classroom-based intervention to educate non-disgured secondary school pupils about the causes of visible difference, challenge appearance-related myths, and generate strategies to tackle their own social difculties. Results showed signicant improvements in body image, self-esteem, and social condence relative to non-intervention controls, with improvements maintained at 6-month follow-up. Educative approaches have also been developed for healthcare professionals and employers. Changing Faces has produced condition-specic information packs and training courses for healthcare professionals working with disgured groups. Initial results indicate increased condence in offering support for appearance concerns and in promoting effective coping strategies for social situations (Clarke & Cooper, 2001). Bernstein (1976) commented on the possible arrogance of assuming that societal manipulations could materially change the psychological well-being of disgured people. Yet, it is widely accepted that adjustment problems would be eased if society were less obsessed with appearance and the public better educated about the causes and difculties associated with disgurement. TV documentaries, lms, and books promoting acceptance of diversity and exploding the appearance-related myths have been produced (e.g. Zephaniah, 1999), but there is plenty of scope for more. Cognitive behavioural interventions (CBT) Given that research evidence has identied social anxiety as a key difculty faced by disgured people,

it seems reasonable that CBT, such as those techniques used effectively with social phobics (Newell & Marks, 2000) would be benecial. Newell and Clarke (2000) conducted a randomised trial to evaluate a self-help leaet dealing with social difculties. This focused on anxiety and avoidance in social situations, and offered advice along cognitive behavioural lines, particularly emphasising exposure principles. At follow-up, the treatment group reported signicantly more favourable levels of social avoidance, anxiety and depression compared with non-intervention controls. Social skills training has been found effective amongst adolescents affected by a cleft (Kapp-Simon, 1995) or by burns (Blakeney et al., 1990). Robinson et al. (1996) evaluated a social interaction skills training programme offered by Changing Faces. Although the study lacked a control group, their ndings strongly supported the use of this intervention, the benets of which were maintained at 6-month follow-up. Similarly, Kleve, Rumsey, Wyn-Williams, and White (2002) reported signicant improvements following individual CBT on measures of social anxiety, appearance-related distress, general anxiety and depression. Again, these improvements were maintained at 6-month follow-up. However, research has not identied which aspects of cognitive behavioural programmes are the most effective. Moss (1997) has suggested that the social context of the intervention and the opportunity it presents to meet similarly affected individuals is as benecial as the strategies being taught. The precise nature or impact of an intervention will also vary in response to the characteristics and needs of individual attendees and facilitators. Future research should consider the specic value of body image CBT (Cash, 1997; Cash & Strachan, 2002) for persons whose disgurements provoke body image difculties and associated problems.

Research issues Readers of this review will already appreciate that psychosocial research within disgurement remains fraught with methodological challenges, including appropriate sampling, research design, outcome measures, and methodology.

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Sampling The variety and incidence of disguring conditions mean that relatively small numbers are available for research into a particular condition or intervention. Choosing an appropriate comparison or control group can also prove problematic. Researchers have blamed insufcient sample sizes and methodological shortcomings for the reported levels of psychological problems and dysfunction (Eiserman, 2001). However, it is possible that such problems are not being experienced to a signicant level, even in a larger sample. In addition, most research to date has emanated from the USA and UK, with very little exploring the experiences of those from differing cultural groups. Practical and ethical considerations result in a prevailing focus on individuals who encounter the health care system (e.g. Kent & Keahone, 2001) or contact self-help groups or support organisations (e.g. Cochrane & Slade, 1999). We know little about those who do not actively seek treatment. The recent interest in resilience and positive outcomes suggest a focus on this group in future research. Design The majority of research in this area is cross-sectional and correlational. There is a pressing need for longitudinal research to explore the dynamic nature of adjustment to disgurement across the lifespan and the impact of treatments and interventions. Of course, on-going research may become burdensome for participants in addition to proving expensive and time-consuming for researchers. Careful thought should be given to research design in this sensitive area. For example, randomised controlled trials may be appropriate in some instances (e.g. evaluating a new leaet), but not where this would deny patient choice (e.g. if used to compare surgical procedures with differing cosmetic outcomes). Outcome measures As we have seen, constructs most commonly cited as being central to adjustment to disgurement include self-esteem, social anxiety, and body image. However, results are equivocal, partly due to inconsistency in the measures and/or denitions of the constructs used. For

example, a plethora of study-specic and recognised assessments of body image have been used, thus hindering direct comparisons between studies. We refer readers to Thompsons article in this journal issue for a detailed consideration of body image assessment. Outcome measures used in disgurement research vary considerably. Assessment of the impact of surgical intervention has relied heavily on measures of appearance and function completed by clinicians rather than the patients themselves (e.g. Gamba et al., 1992). Third-party ratings tend not to concur with patient ratings and are likely to reect an evaluation of physical dysfunction as opposed to psychosocial impact (Clarke, 1999). This is clearly an area in which subjective, patient-centred assessment is vital. Because interventions are likely to produce emotional, behavioural, cognitive, and physical changes, it seems inappropriate to measure one or two elements in isolation. A balance between a comprehensive assessment and an excessive battery of questionnaires is needed. A recent review of outcome measures in aesthetic surgery (Ching, Thomas, McCabe, & Antony, 2002) recommended the use of body image and quality-of-life measures including the Derriford Scale (Carr et al., 2000), an appearance-related quality of life questionnaire. Unfortunately, these measures take a pathologising approach, and the impact on the participant of completing negatively focused questionnaires is potentially damaging. Patient-centred measures ascertaining participants strengths and abilities in addition to difculties would give a more balanced view of life with a disgurement and would be a valuable resource for planning policy and care provision. In this regard, Cash and Fleming (2002) developed and validated the body image quality of life inventory, which has not yet been used with a disgured population. Methodology Until recently most disgurement research employed quantitative methods of data collection and analysis. Studies sharing the same quantitative measures have enabled some meaningful comparisons, but have these measurements given us a true understanding of the complexities of the psychosocial impact of disgurement? Increasingly, qualitative research is being used to enable a more in-depth understanding of the experience of living with a visible difference

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(Meyerson, 2001; Mouradian, 2001; Thompson & Kent, 2001; Thompson, Kent, & Smith, 2002). However, since care providers and policy makers are generally familiar with quantitative research, we support the combination of both qualitative and quantitative methods to inform the provision of care.

Future directions Throughout this article we have argued for a more positive approach towards care provision and research that focuses on the strengths of people living with a visible difference, as well as an appreciation of accompanying distress and dysfunction. Historically, policy makers and research funding bodies have tended not to make disgurement a priority. Researchers and professionals need to nd ways of moving the issues higher up the agenda if the scientic, clinical and human problems we have highlighted are to be overcome. There is much still to be done!

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