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This series of studies represents the largest programme of research in this area to date. The
quantitative and qualitative results have confirmed the considerable distress experienced by
many people with disfiguring conditions. The research has also provided a much greater
understanding of the factors and processes involved in positive adjustment. The on-going effort
of coping with a disfiguring condition, and the multi-factorial nature of adjustment and distress
are clear, as is the huge range of individual variation in the experiences of those affected.
Levels of distress were high and debilitating for many participants, both in those actively seeking
treatment, and those accessed through community settings.
Socio-cognitive and appearance specific cognitions are key in adjustment, and are likely to be
amenable to intervention. Packages of support and intervention tailored to individual need
should be developed, trialled and refined. This process has begun. An intervention manual
designed to be delivered by psychosocial specialists in one-to-one sessions with those with
greatest need has been informed by the results of this programme, is included in this report and
will be introduced in a training workshop for specialists in November 2009.
In addition, the results indicate that adjustment is labile and can be influenced by a myriad of
factors. These fluctuations indicate the need for the routine availability of support and
intervention. Screening should be offered in health care settings and appropriate referral
pathways for specialist assessment and intervention should be developed. (For a model of how
this might work in the context of health care, see Figure 14).
Routine screening
(e.g. when attending
for treatment &/or at
times at transition or
change)
Psychological
Assessment
Surgical / Medical
Intervention
Psychological
Intervention
Psychological
Intervention
Follow up Discharge Easy access
to intervention
as necessary
Figure 14: Discussion framework for the routine availability of screening, assessment and intervention.
A comprehensive model of care will require training health professionals about psychological
adjustment to disfigurement and of ways of meeting need. Plans are currently underway to
devise a tiered approach to training, ranging from awareness-raising for all health care team
members through to conveying the specialist knowledge needed by professionals taking
particular responsibility for the psychological well being of those affected by disfigurement.
Further funding is needed for both the development of interventions and for the training of health
care professionals.
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