| ABSTRACT OF
RESEARCH
Although there are anecdotal reports of the psychosocial
difficulties faced by people with EB, DebRA is concerned that the psychosocial needs of
adolescents and adults with EB are not being met and that little research evidence exists.
Pilot interviews carried out in 2003/4 demonstrated that the needs of those affected are
considerable and complex and that more widespread research is needed to clarify the extent
and type of difficulties experienced and to inform support materials and interventions
designed to meet the needs of people with EB.
People living with EB and professionals will be interviewed and a representative sample of
young adults with EB will be asked to complete a series of short standardised
psychological tests to identify factors relevant to psychosocial difficulties.
The outcomes of the research will include:
Increased understanding about the type
and extent of psychosocial needs of people with EB
Information on which to base the
development of interventions, e.g. booklets, support materials and self management
programmes, designed to meet the informational and psychosocial needs of those affected
Information to develop recommendations
concerning the training and support needs of carers and health care professionals involved
with EB
Information to disseminate to health
care professionals
Information to underpin DebRA public
education initiatives
FINANCIAL
SUMMARY
|
Year 1
£ |
Year 2 £ |
Year 3 £ |
|
|
|
|
| Staff |
19,726 |
20,300 |
21,052 |
| Expences |
6,000 |
5,000 |
6,500 |
| Equipment |
2,050 |
|
|
| Management @5% |
1,400 |
1,265 |
1,375 |
|
|
|
|
| TOTAL |
29,176 |
26,565 |
28,927 |
The costs of
the third year will be paid by Changing Faces, DebRA’s partner in this project. |
