Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy: a phenomenological study

Künzler-Heule, Patrizia; Beckmann, Sonja; Mahrer‐Imhof, Romy; Semela, David; Händler-Schuster, Daniela

doi:10.1111/jocn.13298

Cited by 32 publications

(45 citation statements)

References 29 publications

(51 reference statements)

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“…This reduced quality of life has an impact of the clinical course of the patients. Frequently, relatives are the first who register initially subtle changes in patients, for example in hepatic encephalopathy, and initiate first steps of therapy [13]. Studies on psychosocial stress of caregivers in chronic diseases such as dementia or ALS have shown that the degree of psychosocial stress even correlates with mortality in relatives and caregivers [14].…”

Section: Discussionmentioning

confidence: 99%

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Nagel

Labenz

Wörns

et al. 2020

Health Qual Life Outcomes

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Background: Patients with liver cirrhosis often suffer from complications such as ascites, gastrointestinal bleeding, and infections, resulting in impaired quality of life. Frequently, the close relatives of patients also suffer from a lower quality of life in chronic diseases. In recent years, acute-to-chronic liver failure has been defined as a separate entity with high mortality. Often several organs are affected which makes intensive care therapy necessary. Little is known about the influence of acute-on-chronic-liver failure (ACLF) on the quality of life of patients and the psychosocial burden on close relatives.Aim: The purpose of this prospective study is to investigate the influence of decompensated liver cirrhosis and the onset of ACLF of the patient's' quality of life and the psychosocial burden of close relatives.Method: In this nonrandomized prospective cohort study a total of 63 patients with acute decompensation of liver cirrhosis and hospital admission were enrolled in the study. To assess the quality of life of patients, the disease specific CLDQ questionnaire was assessed. In addition. Quality of life and psychosocial burden of first degree relatives was measured using the generic SF-36 questionnaire as well as the Zarit Burden Score.Results: 21 of the 63 patients suffered from ACLF. Patients with ACLF showed a lower quality of life in terms of worries compared to patients with only decompensated liver cirrhosis (3,57 ± 1,17 vs. 4,48 ± 1,27; p value: 0,008) and increased systemic symptoms (3,29 ± 1,19 vs. 4,48 ± 1,58; p value: 0,004). The univariate analysis confirmed the link between the existence of an ACLF and the concerns of patients. (p value: 0,001). The organ failure score was significantly associated with overall CLDQ scores, especially with worries and systemic symptoms of patients. Interestingly the psychosocial burden and quality of life of close relative correlates with patient's quality of life and was influenced by the onset of an acute-on-chronic liver failure. Conclusion: Patients with decompensated liver cirrhosis suffer from impaired quality of life. In particular, patients with ACLF have a significantly reduced quality of life. The extent of the psychosocial burden on close relative correlates with poor quality of life in patients with decompensated liver disease and is influenced by the existence of ACLF.

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Section: Discussionmentioning

confidence: 99%

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Nagel

Labenz

Wörns

et al. 2020

Health Qual Life Outcomes

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“…Since the scale encompasses most recognizable risk factors for hepatic encephalopathy, some relevant educational materials could be designed to help the patients acquire relevant preventive knowledge and adopt methods for early prevention [24]. As a result, the patients who are at risk may bene t from more frequent support and education of caregivers and may learn to prevent falls and recurrence with the help of precise advice [25].…”

Section: Discussionmentioning

confidence: 99%

Development and validation of a risk assessment scale for hepatic encephalopathy in cirrhotic patients

Wang

Liu

Wang

2019

Preprint

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Background: This study aims to develop a risk assessment scale to assess and quantify risk of hepatic encephalopathy in cirrhotic patients. Methods: Data were derived from two Delphi rounds and a cross-sectional survey of 276 cirrhotic patients. The minimal consensus were a mean score 3.5 on a scale of 1 to 5, and a coefficient of variation 0.25. The reliability and validity of the scale were validated by a cross-sectional survey. Results: After two Delphi rounds and item analysis, a final 23-item scale covered two dimensions. The total Cronbach’s αretest Cronbach’s α, interrater Cronbach’s α and split-half Cronbach’s α were higher than 0.7, showing an acceptable reliability. The AUC was 0.792, and the sensitivity and specificity were 83.9% and 59.6%, respectively, indicating that the scale had a good predictive validity. Conclusion: This scale may be a promising tool for estimating and ranking risk of hepatic encephalopathy. Future research is necessary to apply it in hepatic encephalopathy.

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“…In the limited research available, informal caregivers of patients with ESLD are depressed (Malik et al, 2014) and feel overwhelmed (Kunzler-Heule, Beckmann, Mahrer-Imhof, Semela, & Handler-Schuster, 2016). They experience uncertainty, fears (Meltzer & Rodrigue, 2001), and significant caregiver strain (Bajaj et al, 2011;Miyazaki et al, 2010).…”

Section: Physical and Psychological Symptoms In Caregivers Of Patiementioning

confidence: 99%

Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

Hansen

Lyons

Dieckmann

et al. 2017

Research in Nursing & Health

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Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, “Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads,” which is currently in progress. The study is designed to (1) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (2) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (3) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.

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Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy: a phenomenological study

Abstract: Nurses should acknowledge caregivers as experts in caring for their loved ones. Nurses can assist caregivers in managing an episode of hepatic encephalopathy and can provide individualised interventions to ease the future burden.

Cited by 32 publications

References 29 publications

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives

Development and validation of a risk assessment scale for hepatic encephalopathy in cirrhotic patients

Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

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