Young Person Face IT

Nettbasert støtte for ungdom som har fått utseendet påvirket av sykdom eller skader.

The Therapeutic Framework of YP Face IT

Research has identified the importance of psychosocial support, particularly from health professionals, in helping individuals adjust to an altered appearance and supports the view that individuals need to develop a tool box of self-management skills, rather than a reliance exclusively on medical and surgical solutions (Argyle 1988; Bowden et al; 1980; Cobbs; 1976, Kleve & Robinson; 1999, Bessell & Moss; 2007).

The first step in the developmental process of YP Face IT was therefore to assess the methodological validity of existing psychosocial interventions for young people in this area. A systematic review of the literature by Jenkinson et al (in press) found that there is a lack of evidence-based interventions and support services specifically designed for young people with disfigurements. Of the few available for evaluation, most lack methodological rigour.

The authors did however conclude that cognitive behavioural therapy (CBT) and social skills based interventions, delivered within a package of care, are the most promising type of intervention and that this approach is worthy of more systematic investigation.

This view is consistent with and reinforced by the success of Face IT, an online intervention for adults (those 18 years and over), designed by the Centre for Appearance Research in consultation with the charity Changing Faces and other expert clinicians in the field of appearance psychology (Bessell et al, 2010). Face IT provides self-management skills via social interaction skills training (SIST) and cognitive behavioural therapy (CBT) techniques. In a randomised controlled trial, Face IT was found to be effective at reducing levels of depression, anxiety and appearance concerns when administered in an adult clinic setting and facilitated by an appropriately trained health care professional (Bessell et al, 2012).

In developing an intervention for young people, we believe that the online mode of delivery of the YP Face IT intervention will be particularly appealing. Studies have indicated that young people prefer to seek health-related support and information via the internet, rather than talking directly to healthcare professionals (Gray et al, 2005). Online interventions are available at a time and place convenient for the user and are easily accessible and interactive, a benefit over paper-based material. Online access can also overcome the difficulty of reaching a population of young people for whom social avoidance is a defining characteristic (Newell, 1999), and a population reluctant to seek help due to the perceived stigma associated with therapy - a perception commonly experienced by those with disfiguring conditions (Wright & Bell, 2003; Fox, 2008). A systematic review of the computerised cognitive-behavioural therapy (cCBT) literature has also found this mode of delivery to be effective at treating mild-to-moderate levels of anxiety and depression amongst young people (Richardson et al, 2010) and the National Institute for Health and Clinical Excellence recommend its use (NICE, 2005).

The therapeutic content of YP Face IT is therefore based on the Face IT intervention and focuses on a combination of cognitive restructuring and social skills training. With the help of young people with and without a visible difference, its visual design, functionality, features and the presentation of its content have been made accessible to young people aged between 12 and 17 years old. The programme has a reading age of 12 years

Theoretical models that have informed the development of YP Face IT

There are many different models that contribute to our understanding of the difficulties experienced by young people with visible differences. These include the social anxiety model (Baumeister & Leary; 1995), Goffman's (1968) model of stigma, the social skills model (Bull & Rumsey; 1988) and the model of body image disturbance (Cash; 2001, Cash; 1996). YP Face IT adopts an integrated approach to support that addresses aspects associated with all four models and is largely based on the theoretical approach illustrated by Kent's (2000) Integrated Model of Psychosocial Distress & Intervention for Individuals with Visible Differences.

Social anxiety model (Baumeister & Leary; 1995)

This model suggests that social anxiety is a universal occurrence amongst humans. The social nature of the species and our desire to fit in can lead to fears of rejection by others and a fear of being excluded. Young people with visible differences experience social anxiety, at least in part, because they are fearful of being rejected or excluded on the grounds of having an unusual or different appearance (Kent; 2000). The level of social anxiety an individual experiences acts as a mediating factor between the severity of their visible difference (how objectively noticeable the appearance concern is) and their emotional response (Leary et al; 1998). This model promotes the use of interventions that reduce social anxiety by regularly exposing the individual to social situations (Newell & Marks; 2000).

Stigma model (Goffman; 1963, 1968)

In many ways the stigma model fits with the social anxiety model, but rather than suggesting that social anxiety is simply a universal occurrence, it relates social anxiety to the social stigma of having an unusual appearance. Having a different appearance is a characteristic that is "devalued" by society and as such those with a visible difference are more likely to have real experiences of being excluded, rejected or misjudged. These experiences can undoubtedly lead to social anxiety.

Social skills model

Research suggests that those with visible differences can become preoccupied with their own appearance due to high levels of distress (Acton; 2004). When in public, this preoccupation can make individuals appear distracted, anxious or lacking in confidence (Kent; 2000). The social skills model suggests that many of the negative reactions these individuals experience are less to do with stigma and more a reaction to poor social skills that can create tension and inhibit social interactions (Rumsey & Bull; 1988). The social skills model and the stigma model are not mutually exclusive. The reality of the situation for many people with a visible difference is that they do indeed experience some level of rejection and exclusion, but in some cases this effect is exacerbated by inadequate social skills (Kent; 2000). This model therefore promotes the use of interventions that improve social skills (Rumsey et al; 1993).

Body image disturbance model

This model suggests that the high value placed on appearance within certain societies makes body image disturbance (discontent with one's own appearance) relatively commonplace. Individuals with a visible difference may experience additional dissatisfaction with their body image because they do not conform to the cultural norms of attractiveness imposed by their society. Social pressure to look a certain way, alongside a more personal form of stigma (where they themselves feel they should look “normal”) can lead to high levels of body image disturbance. Body image disturbance is associated with poorer adjustment (Altabe & Thompson; 1996) particularly among individuals heavily invested in their own appearance (White; 2000). This model suggests that interventions should focus on addressing the way individuals feel about their appearance and the negative assumptions they make about the importance of appearance.

Integrated Model (Kent; 2000)

All these models are helpful in describing some of the difficulties faced by individuals with a visible difference, but no one model completely encapsulates the lived experience. Kent (2000) therefore recommends an inclusive model incorporating key features of all four models. Kent's theoretical model has been adopted for YP Face IT, see Figure 1.

Social interaction skills training (SIST) is proposed to address the inappropriate social skills that some individuals with visible differences may have developed and can help young people interact more positively with others and overcome the social stigma attached to looking 'different'.

CBT is advised to address negative thoughts about one's own appearance and the assumptions individuals with visible differences make about the behaviour of others towards them (Thompson & Kent, 2001). CBT also offers individuals an opportunity to test out social situations they may be fearful of due to negative past experiences.

The process of exposure is crucial in helping individuals to engage more fully in social situations and to reduce the limitations that they may be imposing upon their own lives (Kent 2002). As research has shown that some individuals do not have the necessary social skills to effectively engage with others (Rumsey et al, 1993), there is a risk that social exposure without first addressing any limitations in social communication skills might lead to more negative experiences and greater social withdrawal. SIST is therefore not only an integral part of YP Face IT but is also addressed prior to social exposure activities.

The programme acknowledges that reducing the social stigma attached to visible differences is an important part of improving the lived experience of young people. Young people and their family are informed and reassured that interventions to raise public awareness and acceptance of appearance diversity by the Centre for Appearance Research (CAR) and other organisations such as Changing Faces are being developed. However these interventions cannot change society overnight. The programme therefore emphasises the importance of young people developing strategies that can improve their current situation.

Figure 1: Integrated Model of Psychosocial Distress & Intervention for Individuals with Visible Differences (adapted from Kent, 2000)
Integrated Model of Psychosocial Distress & Intervention for 
    Individuals with Visible Differences (adapted from Kent, 2000)
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