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Liver cirrhosis turns life into an unpredictable roller-coaster: A qualitative interview study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Gastroenterology/Hepatology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna.ORCID iD: 0000-0002-0264-9992
School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.ORCID iD: 0000-0003-2960-4994
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna.ORCID iD: 0000-0002-9082-8017
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Gastroenterology/Hepatology.ORCID iD: 0000-0003-4023-9617
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2020 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 29, no 23-24, p. 4532-4543Article in journal (Refereed) Published
Abstract [en]

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 healthcare, 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.

Place, publisher, year, edition, pages
2020. Vol. 29, no 23-24, p. 4532-4543
Keywords [en]
Chronic illness, experiences, interview, liver cirrhosis, nursing, patient-centred care, patients, qualitative research, suffering
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-420747DOI: 10.1111/jocn.15478ISI: 000575320500001PubMedID: 32888238OAI: oai:DiVA.org:uu-420747DiVA, id: diva2:1472012
Available from: 2020-09-30 Created: 2020-09-30 Last updated: 2023-12-03Bibliographically approved
In thesis
1. Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
Open this publication in new window or tab >>Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim and methods: This thesis aimed to study patients’ experiences with illness in their day-to-day lives and their perceived quality of care before and after implementing a 24-month adjunctive registered nurse-based outpatient intervention in liver cirrhosis. Qualitative data was used to explore patient perspectives on day-to-day life and healthcare experiences related to liver cirrhosis. The patient-perceived quality of care following the adjunctive registered nurse-based outpatient care was studied in a pragmatic, randomised controlled multicentre study, preceded by a study protocol.

Results: Liver cirrhosis led to physical symptoms sometimes appearing rapidly. Fatigue, fear and social stigma affected daily life, resulting in cancelled activities and creating an unpredictable daily life situation. Patients with liver cirrhosis lacked adequate support to learn about the disease and manage it. They sought a trustworthy relationship with healthcare providers. When this was lacking, they felt neglected. After 12 months, the adjunctive registered nurse-based outpatient care revealed an improvement in patient-perceived quality of care. Enhancements were observed in 7 out of 22 questionnaire items regarding: patient participation, access to outpatient care, and feeling understood. However, these improvements were not sustained after 24 months.

Conclusions: Fluctuating liver cirrhosis symptoms and constant worry significantly impact patients’ daily lives. Patients expressed a wish to be more involved in their healthcare and support in understanding and managing their illness. Structured registered nurse-based outpatient care for liver cirrhosis could complement physician-based care to meet patient desires for a more person-centred approach, continuity and care coordination. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. p. 89
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2006
Keywords
Liver cirrhosis, Multi-centre study, Nursing care, Patient experiences, Pragmatic clinical trial, Qualitative research, Quality of care
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-517092 (URN)978-91-513-1997-1 (ISBN)
Public defence
2024-02-16, Föreläsningssalen, Falu Hospital, Falun, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2024-01-24 Created: 2023-12-03 Last updated: 2024-01-24

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Hjorth, MariaSjöberg, DanielRorsman, FredrikKaminsky, Elenor

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