Revolutionary new study into the psychology of disfigurement

What would you do if your appearance was suddenly altered forever?

The Centre for Appearance Research (CAR) at the University of the West of England, Bristol has been awarded a record-breaking half a million pounds by a new charity called the Healing Foundation to fund a new study into the psychology of disfigurement. This is the largest single investment in a study of this type that has ever taken place, not only in the UK, but in Europe. The study will provide valuable insights into why some people cope with disfigurement better than others. This information can then be used to help those who experience difficulty coming to terms with their altered appearance.

Mrs Pam Warren, survivor of the Paddington rail crash in October 1999 commented, “The treatment of physical injuries is well understood and a great deal of time and effort has been spent on understanding the problems associated with mental trauma, but coping with disfigurement has, I think, largely been overlooked. The ground breaking work of the Healing Foundation in this regard has my wholehearted support. I know from personal experience that it is not how the world looks at me but how I look at the world that matters.”

Hundreds of thousands of people in the UK are affected by visible disfigurement, whether due to congenital abnormalities, disease or scarring from accidents. The psychological and social impact of having a disfigurement can be enormous and life-changing, especially in today’s image-conscious society which can marginalise those who appear different. Alongside any accompanying physical obstacles, adapting psychologically to the change in appearance is often one of the most difficult aspects of rehabilitation and recovery. However, up until now, very little research has been carried out to understand the mechanisms of this process. This study will therefore make a major difference in terms of gaining a better understanding of how to help patients go through adjusting to disfigurement.

Professor Nichola Rumsey, the director of the study, explains the ideas behind the research. “It appears from research already carried out that the differences in adjustment between individuals are not related to the severity or cause of the condition. We want to find out why it is that one person can adapt very quickly and lead a full and active life, while another might end up avoiding social situations. This information should enable us to help those who find adapting to a disfigurement difficult, to adapt more quickly.”

The Research team will be working with hospital clinics and GPs and will be looking at a whole range of disfiguring conditions including skin conditions, such as acne, head and neck cancers, burns, amputations and hand surgery, as well as birth marks such as port wine stains. The study will involve around 1,500 people from the South West, London and the Sheffield/Bradford area. They will be asked about their feelings, as well as how they manage with a ‘visible difference’, what support they have had and how they feel about their appearance. They will also be asked to comment on how they see their difference, how noticeable they think it is and how they think others see it.

The Healing Foundation is a unique new professional and scientifically respected organisation that provides funds for research into disfigurement. It was established to champion the cause of people living with disfigurement and visible loss of function by funding research into pioneering surgical and psychological healing techniques.