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Feeling safe or falling through the cracks – Patients’ experiences of healthcare in cirrhosis illness: A qualitative 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
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
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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2023 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 18, no 4, article id e0283611Article in journal (Refereed) Published
Abstract [en]

Introduction

Patients with cirrhosis have a long-lasting relationship with medical personnel. Hierarchy in the healthcare contacts and feeling stigmatised may affect the patient’s interactions with these care providers. Despite healthcare professionals’ awareness of patients’ increased self-care needs, patients report getting insufficient information and support. The patients’ expectations and experiences of interacting with healthcare professionals in cirrhosis care is hence a research area that needs further investigation.

Purpose

To capture patients’ descriptions of healthcare experiences in relation to cirrhosis illness.

Material and methods

Data comprise semi-structured interviews (N = 18) and open-ended questionnaire responses (N = 86) of patients with cirrhosis. Braun and Clarke’s thematic analysis process was used, including both semantic and inductive elements. The study is reported following the COREQ guidelines.

Findings

The analysis resulted in two themes: 1) Struggle to be in a dialogue and 2) Being helped or harmed. Six sub-themes were identified concerning aspects of experiences within each theme during the analysis. These sub-themes included: ‘getting information’, ‘being involved’, ‘being perceived as a person’, ‘enduring care’, ‘feeling lost in the healthcare organisation’, and ‘not being taken care of’.

Conclusions

Patients with cirrhosis express concerns regarding where to turn in the continuum of cirrhosis care. They emphasise the importance of being involved in the dialogue with the healthcare professional, to be perceived as a person with a unique need to be informed. The healthcare organisation and continuity of care are either viewed as confusing or as helping to shape a safe and trustful contact, which was an important difference in feeling helped or harmed. Hence, patients wished for improved collaboration with healthcare professionals and to receive increased information about their disease. Person-centred communication in nurse-led clinics may increase patient satisfaction and prevent patients from falling through the cracks.

Place, publisher, year, edition, pages
Public Library of Science (PLoS), 2023. Vol. 18, no 4, article id e0283611
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-503100DOI: 10.1371/journal.pone.0283611ISI: 000967987200011PubMedID: 37018173OAI: oai:DiVA.org:uu-503100DiVA, id: diva2:1764876
Funder
Uppsala University
Note

The first and last authors contributed equally

The second, third and fourth authors contributed equally

Available from: 2023-06-09 Created: 2023-06-09 Last updated: 2023-12-22Bibliographically 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, MariaSvanberg, AnncarinSjöberg, DanielRorsman, FredrikKaminsky, Elenor

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