Exploring Patients’ Experiences of Living With Liver Cirrhosis-Related Ascites and Receiving Follow-Up Care in Nurse-Led Outpatient Clinics

In Europe the incidence of patients living with liver cirrhosis is growing due to increasing alcohol consumption, increased life span and higher body mass index. Patients with decompensated liver cirrhosis are a vulnerable group of patients suffering from stigma, negative stereotyping and bodily limitations, needing close follow-up care through a holistic nursing care model. This study aimed to explore patients’ experiences of living with cirrhosis-related ascites, and the follow-up care they receive in nurse-led outpatient clinics. A qualitative approach was employed using semi-structured individual interviews and inductive reflexive thematic analysis. Eight interviews were conducted and our analysis generated two major themes: “Coming to terms with the impact of ascites” and “My second home–building partnership roles.” The first theme comprised three sub-themes related to dignity, embodied knowledge and loss of energy. The second theme comprised two sub-themes related to continuity of care and patient involvement in their care. The study provides valuable insights on how nurse-led follow-up care, through continuity, availability, commitment, patient education and patient involvement may relieve the anxiety and distress this patient group may experience due to having a serious disease with an unpredictable trajectory.