After identifying that there was a significant impact on emotional wellbeing when living with PSC, yet a lack of psychological support for both patients and their loved ones, PSC Support awarded £40,000 to researchers to address this situation, and the PSC Wellbeing Study was born.
The purpose of the study is to investigate that impact and develop a Personalised Psychological Intervention framework for PSC. Dr Veronica Ranieri and colleagues at the Tavistock & Portman NHS Foundation Trust are conducting this research. Work began in 2018.
Dr Ranieri initially reviewed scientific literature literature and found (as expected) very little data examining how PSC affects mental health and psychological wellbeing. She also found that the research methods used by the the studies that did exist were inconsistent and not suited to deeply understanding the lived experiences of people affected by PSC.
Dr Ranieri embraced technology by using virtual discussion groups to more fully understand the psychological impact of PSC in order to design an appropriate support framework for people affected by PSC. Patients, family members and healthcare professionals took part in the focus group work.
We are delighted that this innovative methodology has now been published in the British Medical Journal this week:
The virtual focus groups in the PSC Wellbeing Study are now complete and the data is being analysed.
This research study would not be possible without the time given by the healthcare professionals, patients and families who took part in the focus groups. Thank you!