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Title: Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study
Authors : Künzler-Heule, Patrizia
Beckmann, Sonja
Mahrer Imhof, Romy
Semela, David
Händler-Schuster, Daniela
Published in : Journal of Clinical Nursing
Volume(Issue) : 25
Issue : 17-18
Pages : 2559
Pages to: 2568
Publisher / Ed. Institution : Wiley-Blackwell Publishing
Issue Date: 2016
License (according to publishing contract) : Licence according to publishing contract
Type of review: Peer review (Publication)
Language : English
Subjects : Chronic illness; Hepatic encephalopathy; Informal caregiver; Lived experience; Liver cirrhosis; Nursing
Subject (DDC) : 610.73: Nursing
616: Internal medicine and diseases
Abstract: Aims and objectives To explore the experiences of being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy. Background Overt hepatic encephalopathy is a common complication in patients with liver cirrhosis. It is associated with decreased quality of life for patients, and presents a major burden for caregivers. The involvement of informal caregivers in medical care is recommended, but it has not been clearly described. An understanding of the experience of caregivers is needed to improve the support provided to them by healthcare professionals. Design A qualitative, interpretative, phenomenological approach was used. Methods Twelve informal caregivers participated in qualitative interviews. The analysis followed the six steps of the interpretative phenomenological approach. Results Caregivers' experiences were described using five themes: (1) feeling overwhelmed by their loved one having unexplainable symptoms and behaviours; (2) learning that this and previous experiences were complications of liver disease; (3) becoming aware of the symptoms of hepatic encephalopathy; (4) having feelings of being tied down and (5) experiencing and overcoming obstacles in working with healthcare professionals. Conclusions This study provides insight into caregivers' experiences and the consequences for their lives. The first occurrence of symptoms was a shock, but receiving the diagnosis was seen as an important step in understanding and learning. Caregivers provide daily assessments of their relatives' conditions, and they feel responsible for medication management. Over time, the caregivers impressively showed how they were able to incorporate their personal experiences into caregiving and to accept more accountability in managing the disease. Relevance to clinical practice 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.
Departement: Gesundheit
Organisational Unit: Institute of Nursing (IPF)
Publication type: Article in scientific Journal
DOI : 10.1111/jocn.13298
ISSN: 1365-2702
Appears in Collections:Publikationen Gesundheit

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