Body Image and Disfigurement- Issues and Interventions

Body Image 1 (2004) 8397

Body image and disfigurement: issues and interventionsNichola 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 disfigurement can have a profound psychological impactupon the individual concerned. Difficulties 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 appearrelatively unaffected by their visible difference. This article reviews current literature exploring the psychosocial implications ofliving with a visible difference and considers the complex influence of physical, cultural, and psychosocial factors on adjustment.Attempts that have been made to theorise individuals experiences, relevant interventions and care provision are then examinedand the challenges facing researchers in this area are outlined. 2003 Elsevier B.V. All rights reserved.

Keywords: Disfigurement; Appearance; Body image; Visible difference

Defining Disfigurement

Concerns about physical appearance affect a size-able proportion of the general population (Gilbert &Thompson, 2002). Some concerns relate to inheritedcharacteristics, for example, body shape, facial fea-tures. In addition, during a life course, changes to out-ward appearance occursome of which are desired,while others are not (Newell, 2000). Throughout ourlives, the majority of us strive to manipulate the waywe look in some way, in order to present ourselves inthe best possible light. In doing so, we acknowledgeimplicitly that our physical appearance contributes to

Corresponding author.E-mail address: [email protected] (N. Rumsey).

the impressions others form of us, even if we also ac-cept that these impressions can be modified throughsubsequent contact.

What are the implications of these processes forthose who have a visible difference that sets themapart from the norm, and which may lead to thembeing a focus of unwanted attention? What are theconcerns and difficulties they encounter? In the lightof the pervasive emphasis in current society on thebody beautiful, we might intuitively suppose that theconcerns would be significantly greater or differentthan for those whose appearance falls within the nor-mal continuum. Macgregor (1979) argued that a vis-ible difference comprises a social disability, sincein addition to impacting on the thoughts, feelingsand behaviours of those affected, it is also likely to

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84 N. Rumsey, D. Harcourt / Body Image 1 (2004) 8397

be noticed by other people. However, recent researchsuggests that the extent to which a visible differenceresults in social disability involves a complex inter-play of social and individual factors. In addition, thespectrum of emotions, thoughts, and behaviours char-acteristic of people with visible differences has manysimilarities to those experienced by persons who aredissatisfied with aspects of their ostensibly normallooks (Rumsey, 2002a, 2002b).

Drawing the boundary around what does and doesnot constitute a disfigurement is far from straight-forward. The similarities in the experience of thosewho perceive themselves or are perceived by others asdifferent can make this task somewhat arbitrary. Thework of our research group focuses on those whoseappearance concerns are not complicated by a recog-nised psychiatric condition (for example, an eatingdisorder or body dysmorphic disorder) or by a physi-cal disability. In addition, we also focus on body im-age concerns relating to differences that are visible toothers. The research areas included in this review aredefined later. This is followed by an overview of theproblems experienced by those affected, a summary ofthe factors which have been identified as exacerbatingor ameliorating these difficulties, and an examinationof the particular pressures associated with different de-velopmental stages. Finally, the article examines thepotential of a variety of interventions and concludeswith a discussion of the numerous challenges faced byresearchers in this area.

Amongst those who research and practice in thearea of disfigurement, much agonising has takenplace concerning the most appropriate language todescribe a visible difference. The terminology used todate has a predominantly negative focus (for example,disfigurement, abnormality, deformity, defect, etc.),derived from the biomedical approach to care and itsproblem-focused, pathologising emphasis in treatingpresenting conditions. There is now a groundswell ofopinion (see, for example, Eiserman, 2001; Strauss,2001) that negative terminology is at best unhelpful,and at worst exacerbates the difficulties experiencedby those seeking help. Some writers and researchershave striven to compensate for the prevailing neg-ative focus by using terminology such as visibledistinctionhowever this approach has not met withuniversal approval amongst those affected (especiallythose experiencing particular difficulties), and does

not have the advantage of evoking the current sharedunderstanding triggered by the word disfigurement.We have chosen the middle ground and where pos-sible have used terminology which is less negativelyframed, but hopefully still widely understood (i.e. byreplacing disfigurement with difference whereappropriate). In addition, we have chosen to includerecent research on the more positive aspects of beingvisibly different in addition to reviewing the bulk ofthe literature focusing on the associated problems.

The causes of visible difference

The charity Changing Faces estimates that around400,000 people in the UK have some kind of visibledifference (Changing Faces, 2001). However, these es-timates are based on 1988 population census figures,and are vague at best. The exact figures are unknownand current estimates are likely to be conservative. Vis-ible differences result from a surprisingly wide varietyof congenital anomalies, illnesses, injuries, or surgicalinterventions.

Congenital disfigurements include visibly disfig-uring conditions that are fully manifested at birth(e.g. a cleft of the lip), whereas others become moreevident over time (e.g. neurofibromatosis). Harris(1997) proposed that the classification of a con-genital disfigurement should be those that manifestpre-memory, i.e. that the person has no memory oflife without the abnormality. Head and neck malfor-mations are the most common visible birth anomaly.A cleft (or gap) in the lip and/or palate occurs in ap-proximately one in every 800 births, and can manifeston one (unilateral) or both (bilateral) sides of the mid-line of the face. Other less common anomalies resultfrom the failure of the face to develop fully, as in theabsence of an ear, the under-development of cheekand jaw bones (as in Treacher-Collins syndrome), orthe early fusion of the cranial bones (as in Cruzonsand Aperts syndromes). Most facial anomalies arenot associated with deficits in brain function; how-ever, some are linked with a combination of physicalfeatures and learning difficulties (e.g. Downs syn-drome). Harris (1997) has summarised additionalanomalies associated with the delayed maturation ofblood vessels (e.g. cutaneous haemangiamata), includ-ing those vascular malformations (e.g. birthmarks),or from the failure of a limb to develop. Webbing or

N. Rumsey, D. Harcourt / Body Image 1 (2004) 8397 85

syndactyly refers to the failure of fingers or toes toseparate fully, whereas in polydactyly, an extra digitis present on the hand or foot.

Acquired disfigurements include those caused bytrauma (e.g. traffic accidents, burns), surgical inter-vention (e.g. treatment for head and neck cancer),disease (e.g. acne and subsequent scarring), ge-netic predispositions to abnormalities that manifestin later life (e.g. vitiligo), or the absence of nor-mal developmental processes (e.g. asymmetric breastdevelopment).

What are the issues/problems encountered bypersons with visible differences?

The evaluation of body image concerns in peo-ple with disfiguring conditions appears daunting inview of the many different types and body sites,the variability in severity and visibility, and the nu-merous personal, social, and situational character-istics that contribute to body image and adjustment(Rumsey, 2002a, 2002b). However, despite the com-plexity of variables involved, there is a remarkableconsensus concerning the problems and difficultiesreported.

The difficulties most frequently reported by peo-ple who are visibly different relate to negativeself-perceptions and difficulties with social interac-tion. These problems frequently involve spirals ofnegative emotions (e.g. social anxiety), maladaptivethought processes (e.g. fear of negative social eval-uation), unfavourable self-perceptions (for example,lowered self-esteem and unfavourable body image),and negative behaviour patterns (for example, exces-sive social avoidance).

Visible differences and views of the self

Grogan (1999), Harter (1999), and others have doc-umented the close relationship between appearanceand self-concept in the general population. The inter-dependence of these constructs for people with visibledifferences has been supported by a range of studies(Kent & Thompson, 2002). Further illustrations areprovided by the vivid personal accounts of self-doubtand low levels of self-esteem engendered as the resultof 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 ordinaryhappiness . . . anyone meeting me for the first timemust be filled with repugnance and pity. (Richardson,in Lansdown, Rumsey, Bradbury, Carr, & Partridge,1997, p. 61).

Much of the available research evidence con-firms that a visible disfigurement leads to loweredself-confidence and negative self-image across thelifespan. Turner, Thomas, Dowell, Rumsey, and Sandy(1997) found that 73% of their sample of 15- and20-year-olds felt their self-confidence had been verymuch affected by their cleft. Millard and Richman(2001) reported that cleft-affected children are moreat risk than their non-cleft peers for elevated anxiety,general unhappiness, and self-doubt in relation tointerpersonal relationships. Disturbingly, Herskind,Christensen, Juel, and Fogh-Anderson (1993) reporteda doubled suicide rate amongst Danish adults withclefts. However, the research findings are not entirelyclear-cut. Walters (1997) reviewed several studiesreporting levels of self-esteem equal to, or in somecases, higher for disfigured children than non-affectedpeers.

Visible differences and social processes

A visible difference can affect social interaction inmany ways that result in feelings of diminished controlover encounters with others. Robinson (1997) docu-ments the reported difficulties relating to meeting newpeople, making new friends, and the resulting concernsabout developing longer term relationships. Accountsof staring, audible comments, unsolicited questionsabout the nature and cause of the difference, togetherwith other negative or avoidant behaviours by mem-bers of the general population are frequent (Rumsey,2002a, 2002b). Reports of teasing are common. Turneret al. (1997) reported that 60% of their cleft-affectedsample reported being teased about their condition,with 25% reporting that this worried them a lot.Macgregor (1979) described the unwelcome attentionand the consequent lack of anonymity in a crowd asvisual or verbal assaults.

Explanations for the behaviour of others have beenmany and various, and have included beliefs in a justworld (the person with a visible difference must havedeserved their fate, and can therefore be derogated


or avoided), an evolutionary aversion to anything otherthan perfect, and the desire to avoid anything thatmight be contagious (see Rumsey, 1997, for a re-view). These explanations are clearly simplistic, andthe weight of evidence suggests that the responses ofothers are affected by a combination of factors, in-cluding initial stereotyping on the basis of appearanceduring the impression formation stage of an encounter,an uncertainty about how to behave due to a lack ofprevious experience, and the desire to minimise po-tential embarrassment to oneself, or the person with adifference.

Social encounters may also be thrown off-kiltre bythe behaviour of the person with the visible difference.Unconventional non-verbal and or verbal communi-cation may result from an inability to use facial mus-culature in usual ways (for example, as the result of afacial palsy or Moebious syndrome which inhibits thefacial expression of emotion). Many facial differenceslead to difficulty in reading the faces of disfiguredpeople, which in turn results in hesitancy, awkward-ness and an abbreviated interchange (Macgregor,1989).

Negative experiences in social situations can lead toan understandable preoccupation with appearance inanticipation of further negative reactions. Macgregor(1979) talked of those affected being acutely aware ofthe reactions of others, and expending much energy at-tending to these reactions, becoming excessively pre-occupied with their appearance and the effect it hason others. The result is a less than optimal interactionstyle, ranging from shy to aggressive, or often, exces-sive social avoidance.

In summary, a visible disfigurement appears topresent a variety of problems and difficulties forthose affected. The questions remain, how prevalentis psychological distress in this population and whatform does distress take? Newell (2000) found thatpsychological disturbance in plastic surgery patientsas measured by the General Health Questionnaireand the Hospital Anxiety and Depression Scale wasgreater in facially disfigured people than in the gen-eral population. Rumsey, Clarke, and Musa (2002)found levels of anxiety, depression, social anxiety, so-cial avoidance, and quality of life were unfavourablecompared to published norms in a third to a half ofa population of 650 consecutive outpatients attendingfor a variety of disfiguring conditions.

Factors exacerbating or ameliorating distress

Whilst the literature suggests that people withvisible differences are more at risk for body im-age concerns, low self-esteem and social interactionproblems, not all are equally affected. It is clear thatsome individuals find ways of coping effectively andrelegate their difference to a minor role (Rumsey,2002a, 2002b), with some even using it to good ad-vantage. Recently, attention has focused on thoseattributes which appear to buffer a person against thestresses and strains of living with a visible differ-ence. Researchers taking this approach concentrate onstrengths and resilience as opposed to deficits andproblems amongst people with disfigurements. In a se-ries of telephone interviews with 18 people with facialparalysis, Meyerson (2001) identified family support,faith, humour, sense of self, social skills, determina-tion and networking as influencing resilience. Seventypercent of respondents to a survey of members of theCleft Lip and Palate Association in the UK reportedpositive consequences of having a cleft lip and/orpalate (Cochrane & Slade, 1999). Further researchis needed to clarify whether resilience is best under-stood as a personality trait or a coping strategy andhow interventions might facilitate its development.

The physical characteristics of the difference

Contrary to the expectations of the lay public andmany health care providers, the bulk of research, clini-cal experience, and personal accounts demonstrate thatthe extent, type and severity of a disfigurement con-sistently fail to predict adjustment (Rumsey, 2002a,2002b). A persons subjective perception of how no-ticeable their difference is to others is a better predictorof psychological and body image disturbance than isthe assessment of a dispassionate observer or clinician(Harris, 1997). However, the visibility of a differencecan be an additional stressor. If large areas of the faceare affected, the disfigurement is likely to be immedi-ately obvious in most social encounters. Other condi-tions, such as an injury to a hand, are less immediatelyobvious and will be apparent in fewer situations.

Some differences are amenable to camouflage us-ing make-up, prosthetics, clothes or hair. However,for some, camouflage can bring its own problems inrelation to issues of identity (are people responding


to the real me?), over-reliance on the camouflagedimage in social interaction, and fears that the truthwill be discovered (Coughlan & Clarke, 2002).

Macgregor (1979) and others have noted that milddisfigurements can cause as much, if not more, anxietythan highly visible conditions. Lansdown et al. (1997)suggest that less extreme differences may engendergreater variability in the reactions of others, and thisunpredictability contributes to lack of control, result-ing in raised anxiety levels. People with obvious dis-figuration are likely to experience negative reactionsmore consistently than those with a less noticeabledifference, enabling them to develop more consistentand effective ways of coping.

The interesting issue of the impact on body imageand adjustment of additional appearance-related fac-tors over and above the visible difference remains tobe explored. Does a disfigurement impact more onsomeone who is physically attractive to others thansomeone who is not? Starr (1980) found no differencesin a sample of patients affected by a cleft; howeverthe study suffered from various methodological weak-nesses (Newell, 2000). Intuitively, appearance factorsdo play a part in the equation, but this suppositionneeds further exploration.

Debate continues in the literature concerning therole of the aetiology of the visible difference in bodyimage distress and psychosocial adjustment. Newell(2000) provides a useful review and methodologicalcritique of relevant studies and reports less disturbanceamongst people disfigured from birth and those dis-figured from accidental injury compared with personsaffected by skin conditions or with disfiguration fromsurgery.

More research is needed, but in the meantime,generalisations based on broad aetiological categorieshave limited utility and should be resisted. Newell(2000) has pointed out, that those with a differencefrom birth will have had more opportunity to incorpo-rate their anomaly into their body image, to habituateto the responses of others, and to acquire effectivecoping strategies. However, the picture is more com-plex than this as some congenital conditions are pro-gressively more disfiguring over the lifecourse (e.g.vitiligo), whereas other conditions, although apparentat birth, are less obvious following surgical correc-tion (e.g. cleft lip). In addition, broad categorisationssuch as skin conditions may mask important dif-

ferences in specific conditions. Porter, Beuf, Lerner,and Norlund (1986) compared two groups of peo-ple with skin conditions, vitiligo and psoriasis, witha control group. Both condition groups had lowerself-esteem than controls, but those with psoriasis re-ported more prejudice, including being stared at anddiscrimination in the workplace. They also scoredmore poorly on adjustment to the disorder. The re-searchers speculated that the increased visibility ofpsoriasis accounts for this variation. Fluctuating con-ditions such as psoriasis may present particular diffi-culties in terms of the unpredictability of occurrenceand in the resulting reactions of others. It may alsobe that the sometimes raw and scaly appearance ofpsoriasis is more aversive than the depigmentation ofvitiligo.

People who acquire a disfigurement later in lifehave to deal with their reactions to the circumstancessurrounding the onset (e.g. trauma, disease), to theloss of their previous looks and to changes to theirbody image (Bradbury, 1997). Those disfigured bytreatment for a life threatening condition such ascancer may suppress their appearance-related con-cerns during efforts to conquer the disease. In thecase of head and neck cancer, patients may also facepost-surgical difficulties related to eating and speak-ing, all of which can exacerbate appearance-relatedconcerns.

Sociocultural factors

Another challenge for researchers in this area is toaccount for differences in body image and adjustmentdue to factors such as race, culture, gender, socialclass, and age. Strauss (1985) for example, noted thatin Israel, differences between western Jews, orientalJews, and Arabs exist in their explanations of the ori-gins of birth defects, and their approaches to rehabil-itation and community integration. However, the nu-ances of cultural and social differences in responsesto visible birth anomalies and acquired differences re-main largely uninvestigated.

Many writers have pointed to the role played bythe media in creating and exacerbating the pressureson those distressed by their appearance (see Rumsey,1997). The pressure caused by the barrage of imagesof beautiful people, programmes and articles whichencourage us to critically evaluate our appearance


and to correct the faults may be more keenly feltby those who have little hope of conforming to theunrealistic norms manufactured by the media. Iron-ically, a prime culprit is advertising by plastic surgeryclinics, in which the desired end product of surgeryis portrayed using images of all-too-perfect modelsphotographed using soft-focus lenses.

Findings relating to gender effects on the bodyimage concerns of people with visible differencesare mixed. Many writers have assumed that femalessuffer greater psychological disturbance, as the resultof greater emphasis placed on female appearance bysociety (Andreasen & Norris, 1972). Carr, Harris,and James (2000) for example, report that levels ofappearance-related distress and social avoidance arehigher in women who are awaiting cosmetic surgicalprocedures and also in general population groups.Other studies have shown no gender differences(White, 1982). Turner et al. (1997) found that prob-lems warranting psychological referral were morecommon in male cleft-affected children and adoles-cents (69%) than in females (42%). In addition, menhave been found to be less likely to use camouflageon their disfigurement (Lanigan & Cotterill, 1989).

A study by Brown, Roberts, Browne, Byrne, Love,and Streiner (1988) involving 260 burn-affected indi-viduals hinted at the complexity of variables involvedin adjustment, and the role of gender. Low functionaldisability, more recreational activities, greater socialsupport, less avoidant coping, and more problem solv-ing accounted for 55% of the variance. In men themost powerful predictor of adjustment was less func-tional disability, while for women, it was the use ofproblem solving coping.

Coping styles

Adaptive and maladaptive coping styles have beeninvestigated in relation to the body image concernsand adjustment of people with disfigurements, thoughmuch of the evidence is anecdotal (see Moss, 1997).Until recently, it has been assumed that denial or anavoidant coping style is inadvisable, as fear of theparticular situation is exacerbated and the develop-ment of more effective strategies postponed. However,Robinson, Rumsey, and Partridge (1996) and othershave suggested that rather than focusing on supposedlymaladaptive coping strategies, interventions should fo-

cus on broadening the range of skills in a personsrepertoire, thus increasing the flexibility with whichpeople can respond to the varied and often unpre-dictable demands of social situations.

Social interaction skills

As many difficulties relate to the intricacies ofsocial interaction, the social behaviour of those af-fected has been the focus of much research. Newell(2000) reported that people with facial disfigurementsreported similar levels of socially phobic and ago-raphobic avoidance to socially phobic patients, andhigher levels of social avoidance and lower levels ofagoraphobic avoidance than agoraphobic patients. Per-suasive arguments have been put forward that good so-cial skills result in more positive experiences of socialinteraction and in better adjustment amongst disfig-ured populations (Bull & Rumsey, 1988; Macgregor,1979). Researchers have also demonstrated the ben-eficial effects of social interaction skills trainingfor people with visible differences (Kapp-Simon,1995; Robinson et al., 1996; Rumsey, Bull, &Gahagen, 1986). However the cognitive processeslinking self-image, beliefs about impressions formedby others and the reactions of others are complex andremain to be fully explored.

The family environment and social support

The role of social support has been widely acknowl-edged as a buffer of the consequences of stress. Un-fortunately, the social avoidance and withdrawal thatare common reactions to disfigurement can result in asmaller network of support for those affected. Personalaccounts testify to feeling at ease with familiar others,who are perceived as seeing through superficial ap-pearances to the real person beneath (see Lansdownet al., 1997). Partners and families are likely to be themain provider of support, yet they themselves may betrying to deal with their own reactions and distress sur-rounding the disfigurement. Baker (1992) found pos-itive social support improved rehabilitation outcomesfor head and neck cancer patients 6 months after treat-ment. The benefits of support from family, friends andpeers for those affected by burns have also been re-ported (Blakeney, Portman, & Rutan, 1990; Browneet al., 1985; Orr, Reznikoff, & Smith, 1989).


Factors linked to developmental stages

Lansdown, Lloyd, and Hunter (1991) have charac-terised a visible difference as an underlying stressorthroughout the lifespan, which may exacerbate thepressures associated with the various developmen-tal stages. Transitional periods including changingschools, jobs, or neighbourhoods can be particularlychallenging for individuals with a visible disfigure-ment (Bradbury, 1997). Considerable effort is requiredto leave support systems for the relative unknown.New strategies must be developed for dealing with thereactions of unfamiliar others, and considerable initia-tive is required to progress beyond initial encountersto form new relationships.

The birth of an infant with a visible difference canpresent new parents with unexpected emotions, reac-tions, and challenges that may adversely affect the ini-tial bonding process (Walters, 1997). In some cases,the facial expressions of the infant may be affected,and caregivers may find it hard to respond appropri-ately. Although some mothers may hold and stimulatetheir infants less than mothers of normal babies, at-tachment is by no means always affected. By the endof the first year, the weight of evidence supports theexistence of normal patterns of attachment for mostbabies and their parents (Speltz, Endriga, Fisher, &Mason, 1997).

Parents feelings about their childs appearance arelikely to be transmitted and then assimilated by thechild, influencing the affected childs perception ofhis or her disfigurement the emerging body image andfeelings of self-worth (Kearney-Cooke, 2002). Fam-ilies vary considerably in their strategies for dealingwith a physical difference. Some discuss it openly;others may act as if it does not exist (for example, seeStorrys account in Lansdown et al., 1997). Parentsmay be over-protective and in turn, children may notwant to raise issues related to their appearance for fearof upsetting their parents (Bradbury, 1997).

Most children are teased during the course of theirschool career, and those with a visible differenceoften experience appearance-related teasing and bul-lying (Turner et al., 1997). Gilbert and Thompson(2002) have argued convincingly for a link betweenappearance-related teasing, body dissatisfaction andgeneral psychological disturbance. Siblings may alsobecome the focus of this unwanted attention or may

be questioned about their affected brother or sistersappearance (Bradbury, 1997).

Treatment decisions made during childhood, ado-lescence and adulthood can be stressful. Decidingwhether or not to undergo appearance-altering surgerymay not be straightforward, and those affected canquestion their own motivation and that of othersfor putting themselves through the associated stress(Hearst & Middleton, 1997). Hopes and aspirationsof outcomes may be unrealistic, and can lead to dis-appointment when the reality of the aesthetic resultbecomes apparent.

The physical and psychological changes associatedwith adolescence increase the focus on physical ap-pearance for the majority of adolescents, and havinga visible disfigurement during this period may presentparticular challenges. Image counts in the dating game,and joining an acceptable social grouping can be diffi-cult if social confidence has been in some way eroded.Harter (1999) reported that teenagers who believedtheir appearance determined their self-worth had lowerself-esteem and greater depression than adolescentswho believed their self-worth determined their feelingsabout their appearance. This effect may be magnifiedfor those with a visible difference. In a comparison ofadolescents who had undergone cancer treatment withage- and gender-matched controls, Pendley, Dahlquist,and Dreyer (1997) found that those who perceivedtheir cancer to have affected their appearance reportedhigher levels of social anxiety and loneliness.

In adulthood, personal accounts refer to difficultiesfinding the desired type of employment (Lansdownet al., 1997), particularly in roles that involve high lev-els of social visibility. Responses to these difficultiesvary, with some deliberately choosing a low profile ca-reer, and others not seeking advancement (Bradbury,1997). In the UK, the Disability Discrimination Actnow precludes employers from discriminating againsttheir employees because of their appearance.

Social difficulties may persist into adulthood. Es-tablishing relationships can be perceived as problem-atic for people who are uncomfortable about theirappearance. In addition, once a relationship has beenestablished, concerns about the visible difference maycause ongoing difficulties, for example in relation tointimacy. These problems usually relate more to theaffected person than the partner (Bradbury, 1997).The issue of whether or not to have children may be


problematic for those with a genetic predispositionfor a visible anomaly.

For non-disfigured people, middle and later adult-hood can bring stability to body image and self-esteem, resulting from a reduced reliance on physicalappearance and on the opinions of others. Spicer(2002) found that a small proportion of older adultswith visible skin conditions reported high levels ofconcern, yet many still experienced significant dis-tress. These processes may also apply to older peoplewith visible differences, but research evidence con-cerning this effect is limited. Advancing age maybring with it a number of unique problems in dealingwith the practicalities of a disfigurement or changedappearance (Harrison & Maguire, 1995). For exam-ple, conditions such as arthritis may compound anydifficulties in cleaning or using prosthetic devices, andsagging skin may make abnormality more noticeable.

Overall, this consideration of the role of various psy-chosocial factors in the body image concerns of peo-ple with visible differences suggests that expecting arelationship between any one variable and adjustmentis too simplistic. Future research needs to be multi-variate as opposed to focused on the role of a singlevariable.

How can the psychosocial impact of disfigurementbe explained?

A variety of approaches have been used to explainpeoples experiences of living with a visible differ-ence. The extent to which body image is defined andincluded in these frameworks varies considerablyinsome instances the construct is used as an antecedent,in others it is included as a process variable and othersas an outcome.

Some researchers have adapted frameworks fromother contexts. Dropkin (1989), for example, usedLazaruss model of stress and coping to explainpost-operative recovery and adjustment to body imagechanges following surgery for head and neck can-cer. Successful adaptation required individuals tochange their personal value system and to place lessreliance upon appearance. Heason (2003) exploredthe 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 experiencesof disfigurement. Other writers (Kent, 2000; Newell,2000) have criticised the lack of theoretical frame-works developed exclusively for this purpose and inrecent years a number of disfigurement-specificmodels have been proposed.

Newell (2000) adapted ideas originally proposed byLethem, Slade, Troup, and Bentley (1983) regardingdealing with chronic pain. Newell and Marks (2000)suggest that many of the psychological difficulties ofpeople experiencing threats to their body image aresimilar to those suffered by people with social pho-bia. Newell proposes a continuum of confrontationaland avoidant responses, with confrontation presumedto be more adaptive, and avoidance contributing tofurther disability and handicap. Avoidance is deemedto be prompted by fear and anticipation of a nega-tive outcome and leads to the individual engaging inan increasingly restricted range of activities, with evermore innocuous situations determined as threatening.Newell therefore conceptualises fear and avoidanceas possible mediators in disturbed body image. Hismodel offers a feasible explanation for social avoid-ance grounded in a cognitive-behavioural approach.

Kents (2002) model is also based on cognitive-behavioural principles. Appearance anxiety is thoughtto result from perceived stigma caused by socialnorms. This anxiety increases when an individual isconfronted by what is termed a triggering event(e.g. being invited to a social event in which theirdisfigurement might be on show), leading them toemploy two ways of coping aimed at reducing theiranxiety (specifically, avoidance and concealment).Yet again these strategies only reduce anxiety in theshort-term and in the longer term serve to reinforceappearance anxiety. This model explicitly acknowl-edges the role of social norms and it is dynamic,with a series of feedback loops connecting the var-ious factors involved. However, persons are likelyto engage in a wider range of coping strategies thanis included in this model, and a triggering event isnot essentialit may be the threat (anticipation) of atriggering event rather than the event itself that raisesanxiety (Heason, 2003).

White (2000) also drew upon cognitive behaviouralprinciples to develop a model of body imageamongst people treated for cancer. His model pro-poses that psychological distress, negative thoughts,


and maladaptive coping strategies are more evidentamongst patients who place greater importance ontheir appearance and whose cancer is affecting aparticularly valued part of the body.

The success and utility of the models developedto date are limited, as they all require further testingand refinement. New researchers to the area may findthem helpful; however, we must not allow models toconstrain our thinking, blind us to new ideas and to thecomplexities of the relationships among the variousfactors involved.

Interventions and provision of care

The pressures leading a person with a visible dif-ference to seek some kind of professional help comefrom a variety of sources and may be driven by acombination of personal beliefs, coercion from fam-ily, peers, the media, or societal context. Interventionsand provision of care in relation to disfigurement canusefully be classified as biomedical, psychosocial, oreducational.

Biomedical approaches

Current systems of care are predominantly based onthe biomedical model and implicitly subscribe to theunsupported notion of a positive correlation betweenseverity of disfigurement and psychological distress(Clarke, 1999). Nevertheless, normalising appearancecan clearly offer benefits and the successes of medi-cal and surgical interventions should not be underesti-mated. However, these interventions are not a panacea.Hughes (1998) reviewed the effects of surgery forpatients with congenital disfigurements, and whilstmost reported enhanced self-esteem, more positive ap-pearance ratings, and/or improvements in social confi-dence following surgery, the results were not clear-cut.Sarwer (2002) concluded that cosmetic surgery resultsin decreased distress about a particular feature, butdoes not change overall body image. Pruzinsky (2002)reported that the effects of reconstructive surgery onbody image are complex, involving physical, psycho-logical, and social variables. In subscribing to thebiomedical view of a simple relationship between ap-pearance and adjustment, care providers are colludingwith the myth that quality of life necessarily improves

when physical appearance is enhanced. In so doing,professionals further increase the pressure on those af-fected to undergo any available treatment that mightimprove their looks. For some people, one opera-tion may suffice but many undergo multiple surgeriesin the quest for a normal appearance. The ques-tion of when to stop can be complex. Patients andclinicians understandings of improvement and theirexpectations of treatment may differ fundamentally.Complete eradication of a visible disfigurement is rare,and there is usually some residual deformity or scar-ring. Whilst a surgeon might continue to aspire to anideal aesthetic result, many people with a visible dis-figurement want to be unremarkable rather than per-fect and may need to call a halt to the disruption ofsurgery and the associated roller coaster of emotions(Bradbury & Middleton, 1997; Pruzinsky, 2002).

Given the multifaceted nature of adjustment, theprevailing biomedical model of care needs to beexpanded to offer psychosocial support and in-tervention as routine adjuncts or alternatives toappearance-enhancing treatment (Hearst & Middleton,1997; Rumsey, 2002a, 2002b). Slavish adherenceto rigid surgical protocols (e.g. the expectation thatcleft-affected patients will undergo jaw surgery inearly adolescence) can be unhelpful, exerting unduepressure to undergo a prescribed surgical interven-tion. This can make it difficult for those affected toparticipate in decision making. Rather than impos-ing inflexible regimes of care, interventions need tobe carefully planned to take account of individualphysical (e.g. growth) and social issues.

Although there is no doubt that many clinicians andcare teams are aware of the problems their patients en-counter on a daily basis (Hearst & Middleton, 1997),many are unsure how best to meet their patients needsand do not feel sufficiently skilled to deal with psy-chosocial issues (Clarke & Cooper, 2001). Yet im-proved psychosocial support could be offered in manyways (see Rumsey et al., 2002). An ethos of careneeds to be developed in which appearance concernscan be discussed and the patient does not feel stigma-tised by the offer of psychological support to deal withbody image issues. Indeed, failure to create a rapportin which such issues can be discussed might resultin patients being reticent to discuss their concerns forfear of appearing vain or wasting professionals time(Hopwood & Maguire, 1988).


We advocate a normalising rather than a pathologis-ing, problem-focused approach to care and interven-tions. The patient should be treated as a normal personwho happens to have a disfiguring condition. This re-quires care providers to reflect on their own practice,underlying beliefs, and attitudes towards disfigure-ment. Patients should be discouraged from puttingtheir life on hold whilst waiting for a miracle cure, andproviders should avoid reinforcing appearance-relatedmyths and assumptions about the personal impact ofdisfigurement for any particular individual. Profes-sionals may have to curb their enthusiasm to intervenewith established or innovative treatment, and shouldavoid second guessing patients treatment prefer-ences (Lockhart, 1999). The vocabulary used by careproviders may unwittingly increase the pressure onpatients to undergo a procedure (e.g. the desirabilityof correcting a disfigurement or deformity).They should also be aware that power issues withinthe doctor/patient relationship may be especially per-tinent when dealing with the sensitive and emotivetopics of body image and disfigurement (Mouradian,2001).

Psychosocial approaches

Despite a consensus that disfigurement is associ-ated with psychological distress, relevant support andinterventions are not routinely available and most ex-isting psychosocial care is reactive rather than pre-ventive. Some multi-disciplinary teams have access toreferral routes to psychologists or psychiatrists but,waiting lists are often long. However, there are manyways in which psychosocial needs might be met moreeffectively by clinic teams. Routine care should in-clude an assessment of levels of psychosocial distress.Rumsey et al. (2002) suggest some simple questionsthrough which patients concerns can be explored.Ways of identifying patients who require specialistsupport need to be established in the form of clearprotocols for referrals to a clinical psychologist withexpertise in disfigurement.

Decision making

Prior to any treatment, care providers should pro-mote patient involvement in all choices, includingthe type and timing of intervention. Staff need to

be confident in facilitating patient decision making,whilst at the same time recognising that not all pa-tients want this responsibility and some may preferto leave choices to their surgeon (Harcourt, 2001).Decision-making can be especially stressful for pa-tients when the aesthetic outcome is uncertain and ifthere are multiple treatment options available.

Following treatment, reactions to the correction ofan abnormality may not be universally positive. Thoseaccustomed to their difference will have incorporatedit into their self-image, and may feel the altered ap-pearance is not the real me. For example, Storry(1997) (in Lansdown et al., 1997) describes his angerand despair when his much anticipated surgery lefthim feeling that he had lost much of my life (p. 36).Decisions about any further intervention must be madein consultation between the patient and care providers,as the stress of further surgery might conflict with thepatients need to accept a less than perfect outcome.

Information, support, and education

Although it is obvious that people who have a visi-ble difference need accurate and relevant informationthat meets their current and evolving needs, they arenot a homogenous group with uniform requirements.Condition-specific self-help groups can be very usefulsources of support and information about both physi-cal aspects and appearance concerns. Although clearlyhelpful for some, others avoid them because they pre-fer not to define themselves as a member of a groupperceived as stigmatised in some way.

Some groups are organized by those affected, whilstothers are professionally led. It is important to note thatgroups led by those without appropriate training maytoo often focus on the reporting of negative experi-ences, whereas group members may find an unaffectedfacilitator lacks an appreciation of the reality of livingwith a disfigurement. Until recently groups have notbeen the subject of systematic research and the mosteffective aims, structure and activities remain unclear.Kleve and Robinson (1999) reported that profession-ally led groups and individual counselling were thepreferred sources of support amongst 71 burn-injuredadults.

Changing Faces (www.changingfaces.co.uk) hasconsiderable experience in offering advice andrelevant resources (including booklets, videos, class-


room, and work-based activities) to self-referred in-dividuals, families and relevant agencies. Kish andLansdown (2000) outlined the Changing Faces pro-gramme for children and adolescents with visibledifferences, promoting emotional support (e.g. en-couragement to express feelings openly), cognitivestrategies (e.g. to promote a positive self-image), andtechniques designed to promote adaptive behaviour(e.g. social interaction skills training). Clarke (1999)has also summarised the organisations approach foradults.

Changing Faces has produced classroom-basedactivities and strategies for school assemblies.Lovegrove (2002) evaluated a classroom-based inter-vention to educate non-disfigured secondary schoolpupils about the causes of visible difference, challengeappearance-related myths, and generate strategies totackle their own social difficulties. Results showedsignificant improvements in body image, self-esteem,and social confidence relative to non-interventioncontrols, with improvements maintained at 6-monthfollow-up.

Educative approaches have also been developed forhealthcare professionals and employers. ChangingFaces has produced condition-specific informationpacks and training courses for healthcare profession-als working with disfigured groups. Initial resultsindicate increased confidence in offering support forappearance concerns and in promoting effective cop-ing strategies for social situations (Clarke & Cooper,2001).

Bernstein (1976) commented on the possible arro-gance of assuming that societal manipulations couldmaterially change the psychological well-being ofdisfigured people. Yet, it is widely accepted that ad-justment problems would be eased if society wereless obsessed with appearance and the public bettereducated about the causes and difficulties associatedwith disfigurement. TV documentaries, films, andbooks promoting acceptance of diversity and explod-ing the appearance-related myths have been produced(e.g. Zephaniah, 1999), but there is plenty of scopefor more.

Cognitive behavioural interventions (CBT)

Given that research evidence has identified socialanxiety as a key difficulty faced by disfigured people,

it seems reasonable that CBT, such as those tech-niques used effectively with social phobics (Newell &Marks, 2000) would be beneficial. Newell and Clarke(2000) conducted a randomised trial to evaluate aself-help leaflet dealing with social difficulties. Thisfocused on anxiety and avoidance in social situations,and offered advice along cognitive behavioural lines,particularly emphasising exposure principles. Atfollow-up, the treatment group reported significantlymore favourable levels of social avoidance, anxi-ety and depression compared with non-interventioncontrols.

Social skills training has been found effectiveamongst adolescents affected by a cleft (Kapp-Simon,1995) or by burns (Blakeney et al., 1990). Robinsonet al. (1996) evaluated a social interaction skillstraining programme offered by Changing Faces. Al-though the study lacked a control group, their find-ings strongly supported the use of this intervention,the benefits of which were maintained at 6-monthfollow-up. Similarly, Kleve, Rumsey, Wyn-Williams,and White (2002) reported significant improvementsfollowing individual CBT on measures of social anx-iety, appearance-related distress, general anxiety anddepression. Again, these improvements were main-tained at 6-month follow-up.

However, research has not identified which aspectsof cognitive behavioural programmes are the most ef-fective. Moss (1997) has suggested that the social con-text of the intervention and the opportunity it presentsto meet similarly affected individuals is as beneficialas the strategies being taught. The precise nature orimpact of an intervention will also vary in responseto the characteristics and needs of individual atten-dees and facilitators. Future research should considerthe specific value of body image CBT (Cash, 1997;Cash & Strachan, 2002) for persons whose disfigure-ments provoke body image difficulties and associatedproblems.

Research issues

Readers of this review will already appreciate thatpsychosocial research within disfigurement remainsfraught with methodological challenges, including ap-propriate sampling, research design, outcome mea-sures, and methodology.


Sampling

The variety and incidence of disfiguring condi-tions mean that relatively small numbers are availablefor research into a particular condition or interven-tion. Choosing an appropriate comparison or controlgroup can also prove problematic. Researchers haveblamed insufficient sample sizes and methodologicalshortcomings for the reported levels of psychologicalproblems and dysfunction (Eiserman, 2001). How-ever, it is possible that such problems are not beingexperienced to a significant level, even in a largersample. In addition, most research to date has em-anated from the USA and UK, with very little explor-ing the experiences of those from differing culturalgroups.

Practical and ethical considerations result in a pre-vailing focus on individuals who encounter the healthcare system (e.g. Kent & Keahone, 2001) or con-tact self-help groups or support organisations (e.g.Cochrane & Slade, 1999). We know little about thosewho do not actively seek treatment. The recent inter-est in resilience and positive outcomes suggest a focuson this group in future research.

Design

The majority of research in this area is cross-sectionaland correlational. There is a pressing need for lon-gitudinal research to explore the dynamic natureof adjustment to disfigurement across the lifespanand the impact of treatments and interventions. Ofcourse, on-going research may become burdensomefor participants in addition to proving expensiveand time-consuming for researchers. Careful thoughtshould be given to research design in this sensitivearea. For example, randomised controlled trials maybe appropriate in some instances (e.g. evaluating anew leaflet), but not where this would deny patientchoice (e.g. if used to compare surgical procedureswith differing cosmetic outcomes).Outcome measures

As we have seen, constructs most commonly citedas being central to adjustment to disfigurement includeself-esteem, social anxiety, and body image. However,results are equivocal, partly due to inconsistency in themeasures and/or definitions of the constructs used. For

example, a plethora of study-specific and recognisedassessments of body image have been used, thus hin-dering direct comparisons between studies. We referreaders to Thompsons article in this journal issue fora detailed consideration of body image assessment.

Outcome measures used in disfigurement researchvary considerably. Assessment of the impact of surgi-cal intervention has relied heavily on measures of ap-pearance and function completed by clinicians ratherthan the patients themselves (e.g. Gamba et al., 1992).Third-party ratings tend not to concur with patient rat-ings and are likely to reflect an evaluation of phys-ical dysfunction as opposed to psychosocial impact(Clarke, 1999). This is clearly an area in which sub-jective, patient-centred assessment is vital.

Because interventions are likely to produce emo-tional, behavioural, cognitive, and physical changes, itseems inappropriate to measure one or two elementsin isolation. A balance between a comprehensive as-sessment and an excessive battery of questionnaires isneeded. A recent review of outcome measures in aes-thetic surgery (Ching, Thomas, McCabe, & Antony,2002) recommended the use of body image andquality-of-life measures including the Derriford Scale(Carr et al., 2000), an appearance-related quality oflife questionnaire. Unfortunately, these measures takea pathologising approach, and the impact on the partic-ipant of completing negatively focused questionnairesis potentially damaging. Patient-centred measures as-certaining participants strengths and abilities in addi-tion to difficulties would give a more balanced view oflife with a disfigurement and would be a valuable re-source for planning policy and care provision. In thisregard, Cash and Fleming (2002) developed and vali-dated the body image quality of life inventory, whichhas not yet been used with a disfigured population.

Methodology

Until recently most disfigurement research em-ployed quantitative methods of data collection andanalysis. Studies sharing the same quantitative mea-sures have enabled some meaningful comparisons, buthave these measurements given us a true understand-ing of the complexities of the psychosocial impactof disfigurement? Increasingly, qualitative research isbeing used to enable a more in-depth understandingof the experience of living with a visible difference


(Meyerson, 2001; Mouradian, 2001; Thompson &Kent, 2001; Thompson, Kent, & Smith, 2002). How-ever, since care providers and policy makers are gen-erally familiar with quantitative research, we supportthe combination of both qualitative and quantitativemethods to inform the provision of care.

Future directions

Throughout this article we have argued for a morepositive approach towards care provision and researchthat focuses on the strengths of people living with avisible difference, as well as an appreciation of accom-panying distress and dysfunction. Historically, policymakers and research funding bodies have tended not tomake disfigurement a priority. Researchers and profes-sionals need to find ways of moving the issues higherup the agenda if the scientific, clinical and humanproblems we have highlighted are to be overcome.There is much still to be done!

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Body image and disfigurement: issues and interventionsDefining "Disfigurement"The causes of visible difference

What are the issues/problems encountered by persons with visible differences?Visible differences and views of the selfVisible differences and social processes

Factors exacerbating or ameliorating distressThe physical characteristics of the differenceSociocultural factorsCoping stylesSocial interaction skillsThe family environment and social supportFactors linked to developmental stages

How can the psychosocial impact of disfigurement be explained?Interventions and provision of careBiomedical approachesPsychosocial approachesDecision makingInformation, support, and educationCognitive behavioural interventions (CBT)

Research issuesSamplingDesignOutcome measuresMethodology

Future directionsReferences

Documents

Body Image and Disfigurement- Issues and Interventions