Study into psychology of disfigurement seeks participants

Issue date: 27 March 2006


The study, entitled: Factors and processes that contribute to adjustment to appearance, is funded by the Healing Foundation, a new national fundraising charity established to champion the cause of people living with disfigurement and visible loss function. The Study is headed by Professor Nichola Rumsey, and managed by Senior researcher Dr James Daniel of the Centre for Appearance Research (CAR) at the University of the West of England, Bristol.

Dr James Daniel (Bristol, UWE) says, “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 adjusting to the demands of their appearance. Research has shown that how people adjust can't be predicted from the type of condition or how severe it is and that there is a range of psychosocial factors and processes at play. This research is in its infancy, and our current priority is to clarify those factors and processes that make distress worse and those that promote successful psychological adjustment. By focusing on those aspects which are amenable to change, the findings from this research can be used to help develop methods of support and intervention that will help those affected adjust positively.
The Research team are now looking for over 1,500 people to take part in the study. James says, “We will be working with hospital clinics and GPs and will be looking at a whole range of disfiguring conditions including burns, amputations head and neck cancers and hand surgery, as well as birth marks such as port wine stains and skin conditions, such as serious acne. Through a questionnaire 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.
“We are interested in anyone over 18 years old who has a condition that affects their appearance. They may be receiving treatment for this or not, it may be something that is recent or may be a lifelong condition. If interested, participants will be asked to complete a questionnaire booklet. We are looking to recruit around 500 people through GP practices, advertising via posters, media sources, charities and support groups. We are also recruiting over 1000 people with a difference in appearance from various outpatient clinics throughout the UK. For the Bristol recruitment we are attending melanoma and Laser clinics at Frenchay hospital, and we will be attending further clinics shortly. “

The project is a multi-centre study, with UWE as the main centre, working in collaboration with UCL, the University of Sheffield, University of Bradford and University of Warwick. The Centre for Appearance research at UWE is the lead centre for the project, Professor Nichola Rumsey is the project lead, with Dr James Daniel, the senior researcher, responsible for the day to day management of the project. Liz Payne is the research administrator on the project. Researchers at the other institutions are in the process of being recruited.

Anyone interested in finding out more about the study, or to find out if they are suitable to take part should ring James Daniel on 0117 3283975 or email James.Daniel@uwe.ac.uk, they can also find the information sheet for the study at www.science.uwe.ac.uk/car

-ENDS-


Editors notes:

Nichola Rumsey will be talking about the new research on the Simon Mayo show on Radio Five live on the 28 March between 15.00-16.00.

• The questionnaire which participants will complete consists of a collection of questions in a booklet that asks [participants] a variety of questions about there appearance, treatment that they may be having or had in the past, feelings about social networks, anxiety, depression etc. At the end of the questionnaire we ask participants if they would be interested in taking part in other research. Those expressing an interest will be sent further details. We intend to run a longitudinal component of this study for those participants who express an interest, this involves completing a shortened version of the questionnaire three more times over the course of a year. We will also be running a series of smaller scale studies, mostly involving interviewing participants about their experiences.

• This bid has been constructed by an exciting collaboration of key researchers and clinicians in this field. A large scale, multi-centre assessment of the factors involved in adjustment in adults with a wide range of disfiguring conditions is proposed. The main study will be supported by a series of smaller, in-depth investigations. All are designed to inform the development of interventions designed to promote positive adjustment amongst those affected.

• The Healing Foundation (thehealingfoundation.org) 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. The Healing Foundation has awarded a record-breaking half a million pounds to the Centre for Appearance Research (CAR) at the University of the West of England, in Bristol to fund this 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.

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