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

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  • Maria Hjorth
  • Anncarin Svanberg
  • Daniel Sjöberg
  • Fredrik Rorsman
  • Elenor Kaminsky

Abstract

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.

Suggested Citation

  • Maria Hjorth & Anncarin Svanberg & Daniel Sjöberg & Fredrik Rorsman & Elenor Kaminsky, 2020. "Liver cirrhosis turns life into an unpredictable roller coaster: A qualitative interview study," Journal of Clinical Nursing, John Wiley & Sons, vol. 29(23-24), pages 4532-4543, December.
    • Handle: RePEc:wly:jocnur:v:29:y:2020:i:23-24:p:4532-4543
    DOI: 10.1111/jocn.15478
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    1. Cheng Cheng & Jie Bai & Cong‐Yan Yang & Ming Li & Kerry Inder & Sally Wai‐Chi Chan, 2019. "Patients' experiences of coping with multiple chronic conditions: A qualitative descriptive study," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(23-24), pages 4400-4411, December.
    2. Leire Ambrosio & Juana Maria Senosiain García & Mario Riverol Fernández & Sagrario Anaut Bravo & Sara Díaz De Cerio Ayesa & María Eugenia Ursúa Sesma & Neus Caparrós & Mari Carmen Portillo, 2015. "Living with chronic illness in adults: a concept analysis," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(17-18), pages 2357-2367, September.
    3. Li‐Jan Wu & Ming‐Shun Wu & GI‐Shih Lien & Feng‐Chia Chen & Jen‐Chen Tsai, 2012. "Fatigue and physical activity levels in patients with liver cirrhosis," Journal of Clinical Nursing, John Wiley & Sons, vol. 21(1‐2), pages 129-138, January.
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