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

Abstract

Aim: To explore how persons living with liver cirrhosis experience day-today 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-today 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-today life living with liver cirrhosis comprised four subthemes. 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.

The Main Thing is to be Alive—Exploring Patients’ Experiences With Weight Gain After Liver Transplantation: A Qualitative Study

“…Our participants’ illness and recovery trajectory matched with previous descriptions. Life pre-LTx was dominated by distressing complications associated with a decreased quality of life and frequent hospitalizations, turning it into an unpredictable roller-coaster ( 24 - 26 ). Post-Tx, patients experienced increased physical functioning, emotional health and quality of life, contributing to the perception that the LTx was a salvation, miracle or gift ( 27 - 29 ).…”

The main thing is to be alive-exploring patients’ experiences with weight gain after liver transplantation: a qualitative study

“…Our participants' illness and recovery trajectory matched with previous descriptions. Life pre-LTx was dominated by distressing complications associated with a decreased quality of life and frequent hospitalizations, turning it into an unpredictable roller-coaster (24)(25)(26). Post-Tx, patients experienced increased physical functioning, emotional health and quality of life, contributing to the perception that the LTx was a salvation, miracle or gift (27)(28)(29).…”

The stigma of alcohol-related liver disease and its impact on healthcare

“…Self-stigma denotes the internalisation of public negative attitudes by someone with AUD or ALD. 25,48,49 People with liver disease frequently report feelings of guilt or shame, 2,36 people with cirrhosis in an Iranian study described feeling guilty to the point of avoiding social interaction as a form of self-punishment. 37 The progressive model of self-stigma 50 explains the mechanism driving self-stigma: negative attitudes toward people with AUD are, to some extent, shared by those who develop alcohol problems.…”

“…1 Patients with alcohol-unrelated forms of liver disease often try to distance themselves from patients with ALD in order to avoid the stigma of alcohol dependence. 1,2 Untreated AUD, in turn, poses the risk of delaying the "cascade of care" for ALD (screening, referral, treatment), as has been shown for other liver diseases such as HCV, 3 and in chronic diseases like HIV. 4 AUDs are currently defined somewhat differently in the ICD-11 and DSM-5.…”