New research highlights information gap for people living with disfiguring conditions

Hundreds of thousands of people affected by disfigurement are not getting the information they need to help them deal with the psychological and social aspects of their condition according to new research. Adapting psychologically and socially to looking different, or to a change in appearance is often one of the most difficult aspects of their lives.

Hundreds of thousands of people affected by disfigurement are not getting the information they need to help them deal with the psychological and social aspects of their condition according to new research.  Adapting psychologically and socially to looking different, or to a change in appearance is often one of the most difficult aspects of their lives.

Both patients and health professionals who took part in the research by the Picker Institute for the Healing Foundation said the NHS lacks the resources to provide good psychological support and rehabilitation following trauma or surgery.

Helen Magee, senior research associate at the Picker Institute, said: “People with all kinds of disfiguring conditions told us that it was important to them, but also difficult, to find information about how to deal with their emotions, manage social situations and get counselling.”

Professor Nichola Rumsey, Director of the Centre for Appearance Research, added: “This report highlights that there is a need for health professionals to focus on providing more information of a psycho-social nature to patients.”

Health professionals are at the centre of this information gap. All the patient groups – including people with cancers of the head and neck, people with burns, and people with conditions like psoriasis - said health professionals are their most important source of information, but often do not communicate well, and fail to ‘signpost’ them to further good sources of information.

Brendan Eley, Chief Executive of the Healing Foundation commented:  “This research demonstrates that whilst there is a wide range of materials available to patients there are some real areas for improvement in information provision.  Anyone can be affected by disfigurement and the causes vary widely from congenital conditions to disease and trauma.  Through research like this we are better able to identify what patients want and need.”

James Partridge, Chief Executive of Changing Faces, the charity that supports and represents people with disfigurements, welcomed the findings:  “It is vital that the information necessary to support people living with disfigurement to manage the physical, psychological and practical consequences is provided in the right way at the right time and is made as accessible as possible.”

The report was funded by the GUS Charitable Trust and involved extensive qualitative and quantitative research.  The findings will be used to inform wider debate among the healthcare and voluntary sector on the provision of information for people with disfiguring conditions, a group whose access to information is profoundly affected by the psychological impact of their condition. 

Supporting cross-agency cooperation, the Healing Foundation is underpinning further work in this area and will be organising a national, two day conference for health professionals during 2008, exploring the broad issues of psychological adjustment to disfigurement and information needs.

Other findings from the research were that:
· those people most concerned about their appearance were found to have the greatest information requirements
· there is a need for more of the available information to be made accessible to more people
· visual information – such as photos showing what patients may look like after surgery – is highly valued by those who have used it, even though many patients say beforehand that they may not want it
· peer group support is very highly valued for reassurance and practical advice

The study produced four reports, of which full versions and executive summaries can be downloaded from www.thehealingfoundation.org

 

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