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Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
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, Gastroenterology/Hepatology.ORCID iD: 0000-0002-0264-9992
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
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 [en]
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: urn:nbn:se:uu:diva-517092ISBN: 978-91-513-1997-1 (print)OAI: oai:DiVA.org:uu-517092DiVA, id: diva2:1816531
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
List of papers
1. Nurse-led clinic for patients with liver cirrhosis-effects on health-related quality of life: study protocol of a pragmatic multicentre randomised controlled trial.
Open this publication in new window or tab >>Nurse-led clinic for patients with liver cirrhosis-effects on health-related quality of life: study protocol of a pragmatic multicentre randomised controlled trial.
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2018 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 8, no 10, article id e023064Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Liver cirrhosis affects health-related quality of life (HRQoL) even in its early stages. Morbidity is especially high when the disease decompensates and self-care actions become essential. Nurse involvement in secondary prevention in other chronic diseases has contributed to better symptom control, less need of inpatient care and improved HRQoL. In order to evaluate the impact of nurse involvement in the follow-up of patients with liver cirrhosis, we decided to compare structured nurse-led clinics, inspired by Dorothea Orem's nursing theory and motivational strategies, with a group of patients receiving standard care. The primary outcome is HRQoL and the secondary outcomes are quality of care, visits to outpatient clinics or hospitals, disease progress and health literacy.

METHODS AND ANALYSIS: This is a pragmatic, multicentre randomised controlled study conducted at six Swedish hepatology departments. Eligible patients are adults with diagnosed cirrhosis of the liver (n=500). Participants are randomised into either an intervention with nurse-led follow-up group or into a standard of care group. Recruitment started in November 2016 and is expected to proceed until 2020. Primary outcomes are physical and mental HRQoL measured by RAND-36 at enrolment, after 1 and 2 years.

ETHICS AND DISSEMINATION: The study is ethically approved by the Regional Ethical Review Board in Uppsala. The results shall be disseminated in international conferences and peer-reviewed articles.

TRIAL REGISTRATION NUMBER: NCT02957253; Pre-results.

Keywords
economics, health-related quality of life, liver cirrhosis, nurse-led clinic, nursing, qualituy of care
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-366222 (URN)10.1136/bmjopen-2018-023064 (DOI)000454739500129 ()30337316 (PubMedID)
Available from: 2018-11-18 Created: 2018-11-18 Last updated: 2023-12-03Bibliographically approved
2. Liver cirrhosis turns life into an unpredictable roller-coaster: A qualitative interview study
Open this publication in new window or tab >>Liver cirrhosis turns life into an unpredictable roller-coaster: A qualitative interview study
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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.

Keywords
Chronic illness, experiences, interview, liver cirrhosis, nursing, patient-centred care, patients, qualitative research, suffering
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-420747 (URN)10.1111/jocn.15478 (DOI)000575320500001 ()32888238 (PubMedID)
Available from: 2020-09-30 Created: 2020-09-30 Last updated: 2023-12-03Bibliographically approved
3. Feeling safe or falling through the cracks – Patients’ experiences of healthcare in cirrhosis illness: A qualitative study
Open this publication in new window or tab >>Feeling safe or falling through the cracks – Patients’ experiences of healthcare in cirrhosis illness: A qualitative study
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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
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-503100 (URN)10.1371/journal.pone.0283611 (DOI)000967987200011 ()37018173 (PubMedID)
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
4. Patient perceived quality of cirrhosis care – adjunctive nurse-based care versus standard medical care: A pragmatic multicentre randomised controlled study
Open this publication in new window or tab >>Patient perceived quality of cirrhosis care – adjunctive nurse-based care versus standard medical care: A pragmatic multicentre randomised controlled study
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(English)Manuscript (preprint) (Other academic)
Keywords
Liver cirrhosis, Nursing care, Quality of care, Pragmatic clinical trial, Multicentre study
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-517090 (URN)
Funder
Uppsala University
Available from: 2023-12-03 Created: 2023-12-03 Last updated: 2023-12-03

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