Creating a PPI for PSC
Research type
Research Study
Full title
Creating a Personalised Psychological Intervention for Primary Sclerosing Cholangitis: Understanding mental health and wellbeing among people with PSC
IRAS ID
245092
Contact name
Eilis Kennedy
Contact email
Sponsor organisation
Tavistock & Portman NHS Trust (via NOCLOR)
Duration of Study in the UK
1 years, 6 months, 3 days
Research summary
Primary Sclerosing Cholangitis (PSC) is a rare, chronic illness where symptoms can vary in presentation and severity, and where there is significant uncertainty around quality and length of life. Amidst this uncertainty, little is known about how a diagnosis of PSC impacts on the mental health and wellbeing of the person diagnosed, their partners and family members, and their healthcare provider.
This innovative two-stage qualitative research project asks four questions:
1. What are the experiences of people living with PSC in terms of their mental health and emotional wellbeing?
2. What are the experiences of partners and family members of people living with PSC in terms of how PSC affects their own mental health and wellbeing?
3. What are the experiences of healthcare professionals in working with a patient with PSC and finding appropriate and effective pathways of care?
4. What would a model of ‘Personalised Psychological Intervention for PSC’ for people with PSC and their partners and families look like?These questions will be answered in Stage One by means of asynchronous virtual focus groups and narrative interviews with people diagnosed with PSC, as well as with partners, family members and treating clinicians. Stage Two will build on the findings from Stage One by inviting relevant practitioners to attend a face-to-face roundtable meeting to discuss ideas and issues that could ground a ‘Personalised Psychological Intervention for PSC’ model. This innovative model would mean that interventions could be tailored to not only the individuals diagnosed with PSC, but also their partners and families, to ensure they all receive the best support for their wellbeing.
REC name
London - Queen Square Research Ethics Committee
REC reference
18/LO/1075
Date of REC Opinion
30 Jul 2018
REC opinion
Further Information Favourable Opinion