[Symptom perception and coping in patients with primary biliary cholangitis: a qualitative study in the context of SOMA.LIV].

Abstract

Patients with primary biliary cholangitis (PBC) suffer from a variety of physical complaints such as fatigue, itching or joint pain. Since little is known about the experience of symptoms and the corresponding coping strategies in this patient group, a qualitative study was conducted in which 15 patients with PBC were interviewed. The patients reported being burdened by numerous physical complaints, some of which require extensive coping and adaptation processes. By means of thematic analysis, two overarching themes could be generated from the data material: "Accepting limitations and shifting boundaries" describes the patients' challenge of redefining their own stress limits and adapting demands and expectations to their own capabilities. "Maintaining normality and reorienting" describes the tension between the desire to maintain normality and the challenge of integrating the symptoms as perceptible signs of their illness into their own self-image. The results illustrate the central role of physical symptoms in the everyday lives of many patients with PBC, the complexity of the experience of symptoms and the challenges of dealing with these symptoms. They also emphasize the supportive and mediating function of healthcare practitioners in individual symptom management.