The Primary Sclerosing Cholangitis (PSC) Wellbeing Study: Understanding psychological distress in those living with PSC and those who support them

INTRODUCTION: The impact of living with Primary Sclerosing Cholangitis (PSC) on psychological wellbeing is not well-known. A recent scoping review by the authors found that both depression and anxiety frequently featured in the accounts of those living with the illness. However, less clear were the factors that led to such psychological distress, the impact that the illness had on families and how to best support those living or supporting someone living with the illness. In light of this, the aim of this study was to explore how the illness impacted the lives of both those diagnosed with the illness and those supporting them. METHOD AND RESULTS: This study adopted a phenomenological approach to understand the subjective experiences of individual participants. A total of 30 individuals took part in Asynchronous Virtual Focus Groups hosted on a Virtual Learning Environment for a four-week period. Chronological narratives of individuals’ lived experiences from diagnosis to post-transplant are presented below. These narratives centred upon individuals’ and families’ experiences of receiving a diagnosis, and adjusting to life post-diagnosis, particularly in regard to their relationships with health professionals and other family members, and in preparing for the possibility of transplant. DISCUSSION: The present article provides an in-depth look at how PSC can impact psychological wellbeing, how psychological distress arises and includes advice tailored to individuals, families and health professionals on how to best support each other.