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Patient perceived quality of cirrhosis care – adjunctive nurse-based care versus standard medical care: A pragmatic multicentre randomised controlled study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.ORCID iD: 0000-0002-0264-9992
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Center for Clinical Research Dalarna.ORCID iD: 0000-0003-0672-8214
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.ORCID iD: 0000-0002-2825-1026
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(English)Manuscript (preprint) (Other academic)
Keywords [en]
Liver cirrhosis, Nursing care, Quality of care, Pragmatic clinical trial, Multicentre study
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-517090OAI: oai:DiVA.org:uu-517090DiVA, id: diva2:1816527
Funder
Uppsala UniversityAvailable from: 2023-12-03 Created: 2023-12-03 Last updated: 2023-12-03
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, MariaSvanberg, AnncarinLo Martire, RiccardoKaminsky, ElenorRorsman, Fredrik

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Hjorth, MariaSvanberg, AnncarinLo Martire, RiccardoKaminsky, ElenorRorsman, Fredrik
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Center for Clinical Research DalarnaDepartment of Medical SciencesDepartment of Public Health and Caring Sciences
Nursing

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CiteExportLink to record
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Citation style
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