2011 Ichthyosis Support Group/British Skin Foundation Small Grant

The Ichthyosis Support Group (ISG) was delighted to team up with the British Skin Foundation (BSF) to award a joint grant of £10,000 for 2011 towards research into helping individuals living with ichthyosis.

From the applications received the ISG’s Medical Advisory Board, and advvisors from the BSF decided the grant should be given to the team at the Centre for Appearance Research, based at the University of the West of England. Below is a summary of the research the team will be conducting.

Centre for Appearance Research

A study to explore the feasibiity of computerised psychosocial support (YP Face It) for young people with appearance-related concerns as a result of ichthyosis.

Research has identified the psychological and social difficulties experienced by young people with appearance-related distress as a result of skin conditions including ichthyosis, and their need for easily accessible age-specific support programmes to help them lead a full and happy life. There are, however, very few support programmes available to meet their needs and psychological resources are limited. In collaboration with young people with a range of visible differences, the Centre for Appearance Research has developed an easily accessible, seven week web-based support programme called Young People’s Face It (YP Face It).

The content of YP Face It is based on an adult intervention (Face IT) which has already been successful in improving the quality of life of adults with appearance altering conditions.  YP Face It uses interactive activities, quizzes, films and peer support to help young people develop coping strategies to manage negative reactions to their appearance, think and feel more positive and overcome social anxiety. It has seven 45 – 60 minute sessions followed by a booster session six weeks later.

With a joint grant from the ISG and the BSF we are conducting a small study to evaluate the suitability of YP Face It specifically for young people with ichthyosis. Ten young people (aged 13-17) with appearance-related concerns will be recruited via the ISG to work through YP Face It on their home computer (or one provided). They will have online supervision from a trained researcher and will have an opportunity to give their views on the suitability of the content and presentation of YP Face It and whether they have found it helpful.

The information from this study will allow us to make amendments to improve the programme for young people with ichthyosis and similar skin conditions. It will also help us to design a larger study to determine whether YP Face Itimproves the quality of life of adolescents struggling to manage the social and psychological consequences of living with any condition that affects appearance. If YP Face It is endorsed by young people, and proves successful in improving their quality of life, it will be a cost-effective addition to the current (limited) support provision. Young people with appearance concerns will have immediate access to advice, coping strategies and peer support.  We eventually plan for YP Face It to be available via the NHS and lay-led organizations such as the ISG.