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:10.21256/zhaw-3551

Please use this identifier to cite or link to this item: https://doi.org/10.21256/zhaw-3551

Publication type:	Article in scientific journal
Type of review:	Peer review (publication)
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
DOI:	10.21256/zhaw-3551 10.1111/jocn.13298
Published in:	Journal of Clinical Nursing
Volume(Issue):	25
Issue:	17-18
Page(s):	2559
Pages to:	2568
Issue Date:	2016
Publisher / Ed. Institution:	Wiley
ISSN:	0962-1067 1365-2702
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 care-giving 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.
URI:	https://digitalcollection.zhaw.ch/handle/11475/4028
Fulltext version:	Published version
License (according to publishing contract):	Licence according to publishing contract
Departement:	School of Health Sciences
Organisational Unit:	Institute of Nursing (IPF)
Appears in collections:	Publikationen Gesundheit

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Künzler-Heule, P., Beckmann, S., Mahrer Imhof, R., Semela, D., & Händler-Schuster, D. (2016). Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study. Journal of Clinical Nursing, 25(17-18), 2559–2568. https://doi.org/10.21256/zhaw-3551

Künzler-Heule, P. et al. (2016) ‘Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study’, Journal of Clinical Nursing, 25(17-18), pp. 2559–2568. Available at: https://doi.org/10.21256/zhaw-3551.

P. Künzler-Heule, S. Beckmann, R. Mahrer Imhof, D. Semela, and D. Händler-Schuster, “Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study,” Journal of Clinical Nursing, vol. 25, no. 17-18, pp. 2559–2568, 2016, doi: 10.21256/zhaw-3551.

KÜNZLER-HEULE, Patrizia, Sonja BECKMANN, Romy MAHRER IMHOF, David SEMELA und Daniela HÄNDLER-SCHUSTER, 2016. Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study. Journal of Clinical Nursing. 2016. Bd. 25, Nr. 17-18, S. 2559–2568. DOI 10.21256/zhaw-3551

Künzler-Heule, Patrizia, Sonja Beckmann, Romy Mahrer Imhof, David Semela, and Daniela Händler-Schuster. 2016. “Being an Informal Caregiver for a Relative with Liver Cirrhosis and Overt Hepatic Encephalopathy : A Phenomenological Study.” Journal of Clinical Nursing 25 (17-18): 2559–68. https://doi.org/10.21256/zhaw-3551.

Künzler-Heule, Patrizia, et al. “Being an Informal Caregiver for a Relative with Liver Cirrhosis and Overt Hepatic Encephalopathy : A Phenomenological Study.” Journal of Clinical Nursing, vol. 25, no. 17-18, 2016, pp. 2559–68, https://doi.org/10.21256/zhaw-3551.