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 co-ordinated 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”.
About the study
This report summarises the results of a three year research programme designed to investigate the psychosocial factors and processes contributing to successful adjustment to disfiguring conditions. The project was generously funded and managed by The Healing Foundation and supported by the Welton Foundation and the Worshipful Company of Tin Plate Workers.
The research team was led by Professor Nichola Rumsey and researchers from The Centre for Appearance Research, University of the West of England, Bristol (UWE), and carried out by a team of researchers from the Universities of Bradford, Sheffield, Warwick and UWE Bristol, University College London and the Royal Free Hospital, London.
An advisory panel of people with personal experience of disfigurement and clinicians involved in their care contributed to the project throughout, including the design, reporting and dissemination stages.