Disfigurement can be a challenging and distressing experience for many of the 1 million people in the UK who have a visible difference of any kind. According to new research presented at the international conference, Appearance Matters,taking place in Bristol on 22 and 23 June, psychological support is as important as functional and surgical treatment in helping people cope with the challenges they face as a result of living with a disfigurement.
The study found that levels of distress were equally high regardless of whether individuals were in the community or actively seeking hospital treatment, highlighting the need for more widely available specialist psychological support for people with disfigurement.
The study, the largest ever of its kind, involved 1265 people with a variety of disfigurements including those resulting from skin conditions, head and neck cancer or amputation. Funded by disfigurement research charity The Healing Foundation and coordinated by researchers at the Centre for Appearance Research at the University of the West of England, the study also showed that common assumptions about who will cope well with a disfigurement are inaccurate.
Previous studies have already established the counterintuitive finding that the distress reported by people with a mild disfigurement may be comparable to that reported by people with more severe disfigurement. This new study suggests for the first time that the visibility of a condition may be less important than previously thought, with people anxious not only about highly visible conditions affecting the face and hands, but also about revealing conditions that are normally covered by clothing.
Equally surprisingly, the study showed that concerns about appearance are not only the preserve of women and younger people. Many men and older people in the study found it difficult to adapt to their disfigurement and were equally as distressed by their appearance. The study also found that distress about appearance can impact on a wide range of daily activities, how a person feels about themselves, and how confident they feel about social situations and intimate relationships. Levels of distress can fluctuate over time and, in an ideal world, specialist psychological support would be offered to all those who are experiencing such difficulties.
However, such specialist support is currently available to very few. In response to this need, the researchers are currently testing a new intervention for psychologists to use with their patients, in order to help them adjust to visible disfigurement.
In 1999, Pam Warren was in the Ladbroke Grove train crash, surviving with full thickness burns to her face, hands and legs. To keep scarring to a minimum, she wore a Perspex face mask for 2 years and became the iconic image most associated with the Paddington Survivor's Group. However, beneath her significant skin deep injuries, the psychological trauma of 'looking different' was often more debilitating. Despite excellent medical care since the accident, Pam recognises the need for improvement in understanding both an individual's and society's reactions to a different appearance.
As a member of the Advisory Panel to this important research project, Pam is a keen advocate of its findings. "There is so much we don't know about why some people are able to get on with life so well after disfigurement, and why some can't. Or even why those who seem to cope well at first, might later need support. It seems that the medical profession themselves have not been entirely sure about what support should be made available or when," she comments. "That is why this work is so important. It gives a better picture, based on real hard evidence, of people's needs and offers the chance of meaningful psychological support for people with disfigurements, whatever the cause." .
Currently more than 1 million people in the UK have a significant disfigurement to the face or body and may have been unable to access specialist psychological support as part of rehabilitation.
According to the authors of the study, medical intervention for this patient group tends to focus primarily on the functional or surgical issues.
It is common to assume that the levels of distress experienced by a person who has a disfigurement are at their highest at or near the time of the trauma. But, in fact, the study shows that many people with a disfigurement need access to long-term psychosocial support, as their emotions and levels of distress can fluctuate depending on what else is happening in their life at the time.
Levels of distress about appearance can increase at any time and can be triggered by a range of factors including the way in which a person interprets the reaction they receive from other people, the importance they place on appearance or cultural and religious beliefs.
The study has also shown that people who experience high levels of distress due to their disfigurement tend to have a more pessimistic outlook on life, higher levels of fear about the reaction of others and feel their disfigurement is difficult to disguise.
To address these unmet needs and to improve referral and treatment of people experiencing high levels of distress due to their disfigurement, the study recommends that more training be provided for health professionals -- both in the community (GPs) and specialist settings (psychologists, members of Multi Disciplinary Teams) -- and that packages of support and intervention should be developed which can be tailored to meet individual clients' needs.
As a result of these findings, the researchers have developed a structured intervention supported by a manual to help psychologists aid their clients' adjustment to their visible disfigurement. The manual is currently being revised with expertise from clinical psychologists and counsellors from across the UK working in the field.
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