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Introduction
EXECUTIVE SUMMARY
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 Worshipful Company of Tin Plate Workers.
The research team was led by Professor Nichola Rumsey and researchers from The Centre for
Appearance Research, UWE Bristol, 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.
Background
Visible disfigurement can have a profound psychological impact. In excess of 1million people in
the UK have a significant disfigurement to the face or body, as the result of a congenital or birth
condition, from trauma, disease, or from medical or surgical interventions to treat other
conditions. However, not all people are equally affected and a proportion adapt positively to the
demands upon them, in some cases perceiving their visible difference as a positive advantage.
Nevertheless, the amount of research examining adaptation has been small, and no adequate
account of the process of adjustment has been developed. This programme of research
presents and explores a model for adjustment.
Aims
• To clarify the psychosocial factors and processes which contribute to variation in
adjustment in people with visible disfigurement
• To use the results to inform the development of packages of support and intervention
Methods of investigation
Participants: People with visible difference recruited from hospital clinics and the community
(some substudies involved GPs, and members of the general public).
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