Liver cirrhosis turns life into an unpredictable roller coaster: A qualitative interview study

AIM: To explore how persons living with liver cirrhosis experience day‐to‐day life. BACKGROUND: Liver cirrhosis is the sixth most common cause of death among adults in Western countries. Persons with advanced liver cirrhosis report poor quality of life, in comparison with other chronic diseases. However, knowledge regarding day‐to‐day life during earlier stages of the disease is lacking. In other chronic diseases, the suffering process is well explored, while in liver cirrhosis, suffering is insufficiently investigated. DESIGN: An exploratory study, with a qualitative inductive interview approach. METHODS: A purposive maximum variation sample of 20 informants with liver cirrhosis aged 25–71, from two gastroenterology outpatient clinics in mid‐Sweden, were interviewed from September 2016 to October 2017. Interview data were analysed inductively with qualitative content analysis. Reporting followed the COREQ guidelines. RESULTS: The experiences of day‐to‐day life living with liver cirrhosis comprised four sub‐themes. Living with liver cirrhosis implied varying levels of deterioration, the most apparent being exhaustion or tiredness. The informants had to find ways of adapting to a new life situation. The insecurity of future health evoked existential reflections such as feeling emotionally and existentially distressed. Shame and guilt were reasons for feeling stigmatised. These sub‐themes emerged into one overarching theme of meaning: life turns into an unpredictable roller coaster. This is based on experiences of liver cirrhosis as an unpredictable disease with fluctuating symptoms, worries and disease progression. CONCLUSION: Living with cirrhosis implies an unpredictable condition with a progressive, stigmatising disease. The fluctuating symptoms and deep concerns about future life pose an increased personal suffering. RELEVANCE TO CLINICAL PRACTICE: Within health care, knowledge of the person's experience is vital to enable and fulfil the person's healthcare needs. Clinical registered nurses need a person‐centred approach to strengthen their patients to cope with their new life situation.