DISFIGUREMENT IS MORE THAN SKIN DEEP
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 22nd & 23rd 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.
Case study:
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”.
Case study:
At the age of 18 months Hemani suffered burns to 35% of her body when a candle caught onto her pyjamas. The resulting scarring spreads from the left side of her head, down her left arm, across her chest and onto her thighs. Now a medical student at the University of Bristol hoping for a career as a burn surgeon.
Commenting on the findings of the research, Hemani says, “I feel blessed to have had an amazing family and a wonderful group of friends who have supported me emotionally throughout my treatment. As a child, my parents never treated me any differently to my siblings and so I have a distinct memory of having a childhood full of happiness and a sense belonging. But I realise that this level of adjustment may not be common. I am sure there are many people, with lesser scars than me, who find it very difficult to cope. This research is an important milestone in improving their access to the right care”.
Key facts:
-
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.
-
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.
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 & dissemination stages.
Available for interview
-
Study researchers: Professor Nichola Rumsey, Dr Diana Harcourt, The Centre for Appearance Research, UWE Bristol; Prof Alex Clarke, Royal Free Hospital, London
-
Brendan Eley, the Healing Foundation
-
Pam Warren, via the Healing Foundation
Editors note:
The Appearance Matters 4 conference is supported by The Healing Foundation and is taking place on 22nd & 23rd June 2010 in Bristol. The Appearance Matters Conference Series has a strong focus on the application of research and attracts delegates from a wide range of professions including academics, clinicians, practitioners, researchers, hospital managers and policy makers involved in the provision of care for people with appearance-related concerns. The conference presents an ideal opportunity for delegates to up-date their knowledge, engage in debate, share ideas and network with others working in this field.
For more information about the Appearance Matters conference please go to www.uwe.ac.uk/events/appearancematters/
Contact details
For further information, or to arrange interviews, please contact:
|
