Issue date: 24 May 2002

Self consciousness during teenage years is a by-product of being an adolescent so it follows that those living with cranio-facial conditions like cleft palate or serious scars from burns confront enormous challenges associated with developing good self image.

UWE’s Centre for Appearance Research (CAR) has been awarded £150K by the US Department of Health and Human Services for a three-year research project which will investigate the quality of life amongst young people with cranio-facial conditions. CAR is the only UK partner for the project which will involve over 300 teenagers who have either congenital facial differences such as cleft lip and/or palate or acquired congenital conditions such as burns to the head and/or neck area.

A total budget of $1.5m has been allocated to the project and UWE’s partners include research centres at Seattle, Washington; Chapel Hill, North Carolina; Chicago, Illinois and Galveston, Texas.

Dr Nichola Rumsey, CAR’s Research Director pointed out the importance of psychosocial support for patients with cranio facial conditions. She said, “It is evident that people who are given additional support by psychologists can develop successful coping strategies when living with a facial disfigurement. Many people with appearance-related conditions understandably find social interaction very difficult. A recent study at Frenchay Hospital in Bristol, which involved 36 people, showed that cognitive behavioural intervention helped to improve self-esteem. This important project will establish a quality of life measure to assess the impact of treatments given.”

Emily Lovegrove will be working on the project with Dr Rumsey. Emily has recently completed a PhD thesis which examines the levels of appearance related concerns and appearance-related teasing and bullying in secondary schools. Emily said, “Adolescents are particularly image conscious and it is especially difficult for those with cranio-facial conditions. We will be looking at the impact of congenital and acquired conditions affecting the head and neck area on adolescents aged 12-18 years. The adolescents talking part will be assessed before during and after treatment and care programmes. It is intended that the quality of life measure will help us to develop support mechanisms for the patients.”

The grant is the largest awarded to the Centre to date and is testament to a growing international reputation. CAR campaigned successfully for a reorganisation of health care nationally for children with cleft palate in the UK. As a direct result of work carried out by the Centre all NHS hospitals with cleft care units now have full time psychologists assigned to them.

Emily Lovegrove concludes “The research will increase our understanding of the impact and benefits of treatments on adolescents. We hope that it will help us to inform health professionals in the care of people with cranio-facial conditions by increasing the role of adolescents in treatment decision-making”.


Editor’s notes

The research, ‘Quality of Life amongst young people with craniofacial conditions’ is funded by the U.S Department of Health and Human Services.

The Centre for Appearance Research at the University of the West of England is the first of its kind in the world. Working closely with hospitals and health organisations the Centre focuses on the psychosocial needs of people with appearance related concerns. The Centre has close links with the charity Changing Faces.

Current research includes work with cleft lip and palate patients; helping cancer patients deal with disfiguring surgery; psycho social needs of outpatients; rehabilitation of burn-injured patients and appearance-related concerns of non-disfigured adolescents.

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