General Interest

Research Results

Summary of a research project by Karen Kearney of Bond University, Australia. Nearly one hundred Scleroderma Society members participated in this research in 2008.

Short summary (pdf)
Full summary (pdf)

Changing Faces Survey

We are keen to understand better the needs of patients with disfiguring conditions and whether they are able to access the help and support they need. We have designed three surveys which can be responded to online using survey monkey in which we will be endeavouring to find out about the current services that are available to provide psychological and social support for people who are living with a condition, injury or marking that affects their appearance:

We are asking adults age 16 and over who live in the UK about their recent experience of support services, what has helped in the past and recommendations they have for the future.

We are asking people who care for a child about provision of support for their child, and/or other members of their family.

We are asking health professionals about their patients' needs and the services available to them. We would also value their opinion on what additional service or support would be useful to particularly what they think our Changing Faces Practitioner development.

We are interested in both people who have used Changing Faces services before, and those who have not..

The surveys are available through our website at www.changingfaces.org.uk

Many thanks for your time.

Best wishes

Henrietta Spalding

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