Disfigurement: Looking beyond face value

A disfigurement resulting from trauma, burns or surgery, may require support from occupational health (OH). With one in 111 people in the UK having a significant facial disfigurement, according to research undertaken in 2008 by Changing Faces – a UK charity that supports and represents disfigured people – there is a chance that an OH adviser will have to manage and rehabilitate an individual with a disfigurement at some point in their career. A bio-psychosocial approach and case management skills will help facilitate this.

A disfigurement is best described as the aesthetic effects of a mark, rash, scar or skin graft on a person’s skin, or an asymmetry or paralysis to their face or body. There are 1.3 million people with a disfigurement on their face or body, and 415,000 people are born with or acquire a disfiguring condition each year, according to Changing Faces research.1

Disfigurement can affect anyone at any time, at any age, from any ethnic group. Common causes of acquired disfigurement are skin conditions such as psoriasis, and wounds such as leg ulcers and subsequent scarring. Disfigurement can also be caused by accidents, burns, facial paralysis and the effects of surgery. It may also be experienced from birth with conditions such as birthmarks, neurofibromatosis, and congenital conditions (such as clefts or craniofacial syndromes).








Effects of disfigurement


Intra-personal issues:



  • Sadness

  • Grief

  • Guilt

  • Anger

  • Depression

  • Challenges sense of self-esteem and self-identity

  • Feeling unable/no confidence to contribute

Inter-personal issues:



  • Stared at

  • Avoided

  • Asked questions

  • Called names

  • Difficulty developing relationships with colleagues

  • Withdrawal

  • Social anxiety

Living with disfigurement

Although medical and surgical treatments are now increasingly sophisticated, they can rarely remove a disfigurement completely. Many individuals experience higher than average levels of psychological distress2 that can have an adverse effect on body image, quality of life, and self-esteem.3 Living with disfigurement can be far from straightforward. The individual may struggle with a lack of confidence and self-esteem issues related to disfigurement can also significantly affect friends, family, colleagues and employers.

For individuals who acquire a disfigurement, research suggests the longer they withdraw from the social environment, the longer the physical and psychological scars will take to heal.3 They will often require rehabilitation back into the workplace, which may present a complex challenge for the OH practitioner. A close partnership between the individual, the employer, and the OH team is essential for successful rehabilitation and a return to productivity.

It is essential for employers, colleagues and practitioners to have an awareness of the common issues experienced by people with disfigurements. Individuals often report either feeling invisible, or highly visible and subject to constant staring. Some members of the public feel they have permission to comment and ask questions, leaving the individual with a degree of uncertainty of what to expect or say in return. This may cause feelings of being ‘on duty’ and constant vigilance and self-consciousness. Other concerns are feeling alone and isolated, or being angry, embarrassed and seeking surgical ‘solutions’.

Socially, the individual may experience a lack of communication with family and friends, or communication that revolves around pity and outpourings of sympathy. A person’s religion, culture and ethnicity may influence how they respond to their disfigurement, which may also determine the way in which they and their colleagues manage their concerns regarding their appearance and the uptake of advice and support.

The individual’s needs and concerns generally fall into three main areas. The first concerns medical considerations, such as:



  • What does my condition involve?

  • Will treatment succeed?

  • Will it be painful?

  • Is it catching?

  • How will it impact on my job?

The second concern may be intra-personal, or dealing with ‘the self’, and the feeling that their changed appearance is affecting the way they feel about themselves and their job.

Thirdly, individuals may be concerned about inter-personal issues: ‘Working with other people looking like this isn’t going to be easy’.

There will also be reactions from other employees as they come to terms with the change in their colleague’s appearance and the way they feel about it. Their feelings may range from commitment to helping and supporting, to sorrow, avoidance, worrying what to say, and complete rejection.4

An important point to remember is that the research suggests it is the ‘perceived’ severity of the disfigurement that most affects a good or poor outcome. Personality and coping style have been found to be more important in how a person copes with disfigurement than the objective view of severity. It is important to gain an understanding of how the individual feels about their difference, as one person’s blemish can be another’s disfigurement.

Research shows that it is behaviour rather than the disfigurement that predicts successful outcomes in social situations.5 An anticipation of negative reactions from others can result in behaviour such as shyness, avoidance or aggressiveness, which tends to provoke negative reactions from other people. One of the factors which have been clearly identified as predictive of a good outcome after acquiring a disfigurement is the number and variety of positive, non-avoidant coping strategies adopted by the individual.5,6 Research also shows that social competence is one of the better predictors of adjustment,7 and that a high level of social skill can serve to overcome any potentially negative effects of disfigurement on social interactions (Rumsey et al, 1986).8

Bio-psychosocial approach to rehabilitation

To facilitate rehabilitation, both Changing Faces and Bupa Wellness suggest using a bio-psychosocial approach. Graham Johnson, OH nursing development manager at Bupa Wellness, states: “This process integrates biological, psychological (which entails thoughts, emotions, and behaviours), and social factors, which all play a significant role in human functioning in the context of disease or illness.”

From an OH perspective when dealing with an employee’s absence and return to work, the OH team can have a positive impact when managing the person’s absence by being aware of the bio-psychosocial model.

The OH team can use case management skills to support the employee and employer in educating and understanding the disease or illness, and its likely impact on the employee’s role and functional ability (not disability) to assist in their transition into the workplace.

Disfigurement can affect a person in many different ways, as well as having degrees of physical impact. In some cases, such as a loss of limb or a stroke, it may affect the individual’s mobility, dexterity, ability to lift or carry, and their senses, such as speech, hearing and eyesight. The individual may have problems with their memory or ability to concentrate and understand instructions and their perception of the risk of physical danger.

Other issues may involve confidence, self-esteem, identity, anxiety and communication. Their comprehension of their own abilities and future job prospects may also be affected by their disfigurement alongside their perceptions of how colleagues may view them and their disfigurement. Not all disfigurements will have a physically disabling effect on the individual as seen in cases of burns, scars and skin conditions, but an accurate assessment is required.

Rehabilitation assessment

To accurately assess the employee’s concerns, there needs to be an open and honest discussion. This discussion may be graded and ongoing throughout the initial stages of their return to work. The assessment needs to consider their previous work standards which should include their past relationships with colleagues, information from previous appraisals, their initiative, and pro-activity in the workplace before the acquisition of their disfigurement.

The individual is more likely to have a positive adjustment if they have or acquire positive beliefs about future prospects after a disfigurement. If in the past they were an outgoing, pro-active employee, then facilitation of a return to their previous personality and coping styles as soon as possible will help positive adjustment. The employee needs to have, or learn, good communication skills to manage other people’s reactions. It is also important to possess or obtain social support from family, friends and professionals, and their employers.









Case study


In 1988, Jayne was working for a brewery in a customer-facing role when she had a car accident. This left her with severe damage to her face which required major reconstructive surgery. Jayne was off work for six months before she returned to work. At the time this was against the advice of the HR manager, but she felt physically fit for work and, understandably, wanted to regain some normality of life. The human resources department and management were unsure of how best to support her and therefore let her return to her normal duties. This process did not involve any discussion or implementation for support mechanisms to help her settle back into her job.

Initially, her colleagues did not know how to react to her disfigurement, which was severe and included the loss of one eye. They tried hard to act normally, but it was obvious they were at a loss on what to say and how to behave.

Jayne struggled to come to terms with her new appearance and loss of identity, while trying to work normally. Her role involved constant customer contact, but customers appeared uncomfortable about her physical appearance. These factors contributed to Jayne displaying erratic behaviour. She often felt defensive and angry, and this was taken out on colleagues. Her colleagues did not challenge this unprofessional behaviour as they felt sorry for her. In the following few months, her behaviour continued to decline.

Her manager finally gave her the ultimatum that she must change her behaviour or risk dismissal. Jayne struggled to improve her behaviour without support, which was difficult as she had many emotional issues concerning her new appearance. She agreed that condoning her bad behaviour had not helped her to come to terms with her return to work.

Many of the factors that led to Jayne’s poor adjustment and unsuccessful rehabilitation could have been avoided. Careful assessment of an appropriate return-to-work date, provision of appropriate psychological support for the individual and staff, and an assessment of the individual’s ability to cope could have enabled Jayne and her colleagues to adjust.


Practical steps for planning rehabilitation

As soon as is practically possible:



  • Reassure the person involved that they will continue to be employed and that practical steps for their return to work will be discussed with them when they feel ready.

  • If the individual has acquired such a disfigurement that a return to work in that position or reasonable adjustment is unrealistic, then this also needs to be discussed carefully with the employee.

  • Colleagues should be kept up to date on the progress and informed of changes and return-to-work timeframes (with the individual’s consent).

If the colleagues wish to visit someone in hospital then this needs to be discussed with the individual first and understanding is required if the individual declines visitors initially.

When the employee is recuperating they may need regular reassurance about the security of their job, as worries about work will only impede recovery and affect confidence levels. If the individual is struggling to adopt positive coping strategies after the offer of support and help from the employer, then help from a psychologist or counsellor should be sought. If necessary, Changing Faces can provide practical help and support in getting people back to work.

When planning the return to work, it may be appropriate to include some of the following suggestions:



  • A phased return to work including flexible or reduced working hours may be necessary, especially if the individual is still receiving medical treatment.

  • Disfigurement awareness training for line managers and colleagues can help enable staff to feel positive and confident in dealing with the change to an employee’s appearance.

  • The provision of alternative equipment may be necessary (eg, an ergonomic keyboard) as well as support in returning to customer-facing duties as some people may find it hard to face customers to begin with.

  • Regular reviews on their progress can be useful to ensure the employee feels supported and has the opportunity to air any concerns or problems they may be experiencing in adjusting to their new appearance and their return to work.

  • Any decisions and adjustments should be recorded, identifying who is responsible for actions agreed.

  • The whole process should be monitored; ensuring problems are dealt with positively and quickly.

Gemma Borwick is training adviser in health and Cathy Ferrett is training adviser in employment at Changing Faces, a national charity that can provide support for employers, health professionals and individuals through its Professionals Programme (offering training and policy advice) and Adult Service (offering counselling and support for individuals and their families).

References

1 Julian D, and Partridge J (2008) The Incidence and Prevalence of Disfigurement. Changing Faces. London.

2 Lansdown et al, 1997 – Lansdown R, Rumsey N, Bradbury E, Carr T & Partridge J (Eds) (1997) Visibly Different: Coping with Disfigurement. Oxford: Butterworth Heinemann.

3 Rumsey et al, 2003 – Rumsey N, Clarke A & White P (2003) Exploring the psychosocial concerns of outpatients with disfiguring conditions. Journal of Wound Care. 12:7. 247

4 Partridge, 1990 – Partridge J (1990) Changing Faces: The Challenge of Facial Disfigurement. Penguin Books: London.

5 Clarke, 1999 -Clarke A (1999) Psychosocial aspects of facial disfigurement: problems, management and the role of a lay-led organization. Psychology, Health & Medicine. 4:2. 127-142.

6 Kleve et al, 2002- Kleve L, Rumsey N, Wyn-Williams M & White P (2002) The effectiveness of cognitive-behavioural interventions provided at Outlook: a disfigurement support unit. Journal of Evaluation in Clinical Practice. 8:4. 387-395

7 Kapp-Simon, 1992 – Kapp-Simon KA, Simon DJ & Kristovitch S (1992) Self-perception, social skill, adjustment and inhibition in young adolescents with craniofacial anomalies. Cleft Palate Craniofacial Journal, 29:4. 352-357

8 Rumsey N, Bull R, Gahagan D (1986) ‘A preliminary study of the potential of social skills for improving the quality of social interaction for the facially disfigured’, Social Behaviour, 1, 143-145

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