Background Primary Sclerosing Cholangitis (PSC) is a rare, chronic, and incurable liver disease characterised by the inflammation and scarring of the bile duct. The speed and aggression at which the disease can progress may vary between individuals. Both the cause and the underlying triggers for its progression and severity remain unknown. Those living with PSC are more at risk of colorectal and biliary tract cancers, and many will eventually need a liver transplant. As with any transplant, there is uncertainty in waiting for an appropriate donor and people can die in the meantime. Living with such continuing uncertainty can cause enduring and substantial psychological distress. Yet, little research focuses on the mental health and wellbeing of people with PSC and their families.
Objective To understand the experiences of those living with PSC, and their families, in terms of their mental health and wellbeing.
Methods Asynchronous Virtual Focus Groups (AVFGs) were undertaken with people diagnosed with PSC, and their family members. AVFGs were chosen as an appropriate method of data collection for this group as the rarity of the disease meant that participants could not be sampled from close or clustered geographical areas. AVFGs allowed people, across the UK, to participate in this study from their home, without substantial cost or travel.
Results Participants’ narratives centred upon their experiences of receiving a diagnosis, contact with health professionals, their support systems and advice they’d give to someone who was newly diagnosed.
Conclusions Uncovering narratives from people affected by rare diseases, such as PSC, has often meant substantial cost or travel for the participant, or their simply not being included due to distance. AVFGs allow for greater inclusion in studies which have the potential to provide positive benefits to the participants.
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