People with ulcerative colitis (UC) report that they feel that stress plays a major role in the onset of their disease and many struggle to cope and live well in the first years after diagnosis. Later, many develop anxiety or depression in response to having UC.
We know that stress plays a role in UC disease activity and relapses, but not what role it plays in the early stages of disease and its subsequent course, and what are the most important sources of stress. There is expert opinion that providing extra support around the time of new onset of IBD may help to prevent or lessen subsequent difficulties coping with the disease.
It is thought that early support could prevent later psychological problems, possibly even reducing relapse number or severity, and enable people to remain active at work and socially and to live well with UC.
As a lifelong diagnosis with no current cure, and with very unpredictable symptoms, it is crucial that people are enabled to live well and cope well with the disease and its impact in order to avoid the subsequent anxiety and depression that often affect people with IBD.
Designing a support package
This PhD will investigate stress at the time of diagnosis and ask people what would help manage their stress. The researchers will then co-design (with people with UC and health professionals) a support package for people to help manage stress and build resilience in the first two years after onset of UC. They will test this support with a group of 40 people with new UC and shall then be able to apply for funding for a large-scale test of the intervention.
The research will be undertaken by Jacqueline Black, supervised by Dr Czuber-Dochan and Professor Christine Norton at Kings College London.
How can you get involved at this stage?
To help UC patients, we need to better understand what causes stress immediately after a UC diagnosis and how people cope.
If you have UC (whether recently diagnosed or not), Jacqueline Black would welcome your input and would very much like to work with you to develop her ideas and guide her research.
This could involve as much or as little time as you can spare, either as a one-off call or regular discussions over the next 3 years.
If this interests you, please contact PaRT@bowelresearchuk.org