Dataset Information

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

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.

SUBMITTER: Hjorth M

PROVIDER: S-EPMC7756679 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Hjorth Maria M Svanberg Anncarin A Sjöberg Daniel D Rorsman Fredrik F Kaminsky Elenor E

Journal of clinical nursing 20201006 23-24

<h4>Aim</h4>To explore how persons living with liver cirrhosis experience day-to-day life.<h4>Background</h4>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, suf ...[more]

PMID: 32888238

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Project description:BackgroundUncertainties related to COVID-19 have strained the mental health of healthcare workers (HCWs) worldwide. Gaining the ability to adapt and thrive under pressure will be key to addressing this. We explore what characterises risk, vulnerability and resilient responses of HCWs during the early stages of the outbreak in Singapore.MethodsWe undertook qualitative theory-guided thematic analysis of e-diary entries from HCWs who navigated the outbreak from June-August 2020. Data were extracted from a subset of an online survey of n = 3616 participants collected across 9 institutions, including restructured hospitals, hospices and affiliated primary care partners.ResultsN = 663 or 18% submitted qualitative journal entries included for analyses. All professional cadres, local as well as foreign HCWs participated. Themes are reported according to the Loads-Levers-Lifts model of resilience and highlighted in italics. The model assumes that resilience is a dynamic process. Key factors threatening mental health (loading) risk included a notable rise in anxiety, the effects of being separated from loved ones, and experiencing heightened emotions and emotional overload. Bad situations were made worse, prompting vulnerable outcomes when HCWs experienced stigma in the community and effects of "public paranoia"; or under conditions where HCWs ended up feeling like a prisoner with little control or choice when either confined to staff accommodation or placed on quarantine/Stay Home Notices. Those with strife in their place of residence also described already difficult situations at work being aggravated by home life. Protection (lifts) came from being able to muster a sense of optimism about the future or feeling grateful for the pace of life slowing down and having the space to reprioritise. In contrast, when risk factors were present, balancing these in the direction of resilient outcomes was achieved by choosing to re-direct stress into positive narratives, drawing on inner agency, uptake of therapeutic activities, social support as well as faith and prayer and drawing comfort from religious community among other factors.ConclusionThe Loads-Levers-Lifts model is used to guide analysis to inform intervention designs. Levers promoting resilience through targeting therapies, workplace policies and awareness campaigns accounting for identified loads are proposed.

Dataset Information

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

Aim

Background

Design

Methods

Results

Conclusion

Relevance to clinical practice

Publications

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

Similar Datasets

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