‘You Have to Start All Over Again…’ Stories About Life With Alcohol-Related Liver Cirrhosis—A Narrative Interview Study

Background

Alcohol-related liver cirrhosis (ALC) is a life-threatening disease and both physically and mentally challenging. At diagnosis, ALC is often at an advanced stage, and symptoms of liver decompensation may be present. Life may be challenged by substance abuse, social problems, limited networks and stigma by the public and the healthcare system. Research on living with ALC is sparse. 

Aim

To explore people's stories about life before and after diagnosis with ALC. 

Methods

The study is empirical and inspired by a phenomenological approach. Six explorative narrative interviews about everyday life were conducted. The participants told their individual stories guided by one main question: ‘What matters to you - tell me about yourself and your life’. Interviews were analysed using an inductive approach, identifying and describing main themes of the six stories. 

Results

Six informants participated; four men and two women aged 46–76 years. Four participants were alcohol abstinent and for two, status was unknown. Number of years living with ALC varied from 1.5 to 16. One main theme, ‘social life – social loss’, and five sub themes ‘alcohol stories’, ‘guilt and shame’, ‘the cirrhosis sequelae’, ‘moving on’ and ‘care and security’ were identified. Themes were interrelated. 

Conclusion

Stories about life with ALC mainly concern social losses and managing daily life and the physical consequences of the disease. In general, the participants seemed to live in the present and did not bring up the future. Though living with a life-threatening disease, they did not talk about death or dying.