The PSC Wellbeing Study

Creating a Personalised Psychological Intervention for Primary Sclerosing Cholangitis: Understanding mental health and wellbeing among people with PSC

 

Researchers at the Tavistock & Portman NHS Foundation Trust are investigating the impact of PSC on mental health and wellbeing with the aim of developing a framework that will help people affected by PSC get the psychological support they need.

 

Why is this research important?

There is currently very little research evidence that shows how a PSC diagnosis impacts on the mental health and wellbeing of a person, and their partners and families. However, PSC Support has identified that there is a significant impact on emotional wellbeing when living with PSC yet a lack of psychological support for both patients and their families and loved ones. This research study aims to investigate that impact and develop a Personalised Psychological Intervention framework for PSC.

 

What is involved?

The researchers are looking for volunteers to take part in an online focus group for four weeks to understand your experience of PSC and its impact on your mental health and wellbeing. You can say as much or as little as you are comfortable with, at any time, from your own home. After the online focus groups, you will have the opportunity to take part in a more in-depth interview either by phone or Skype/GoToMeeting, or face to face.

All information collected will be kept strictly confidential.

 

Who can take part?

Anyone living in the UK with PSC, and/or their family member or partner is eligible to take part in this research.

This research is funded by PSC Support. It is conducted by researchers at the Tavistock & Portman NHS Foundation Trust, with consultation from PSC Support.

 

UPDATE 18 SEP 2018: Stage one of this study is now fully recruited.

If you are interested in taking part in this research or would like more information please contact:

Veronica Ranieri, Researcher, Tavistock and Portman NHS Foundation Trust

Email:  vranieri@tavi-port.nhs.uk Tel: 07474187218