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Publikationstyp: Beitrag in wissenschaftlicher Zeitschrift
Art der Begutachtung: Peer review (Publikation)
Titel: Being an informal caregiver for a relative with liver cirrhosis and overt hepatic encephalopathy : a phenomenological study
Autor/-in: Künzler-Heule, Patrizia
Beckmann, Sonja
Mahrer Imhof, Romy
Semela, David
Händler-Schuster, Daniela
DOI: 10.21256/zhaw-3551
10.1111/jocn.13298
Erschienen in: Journal of Clinical Nursing
Band(Heft): 25
Heft: 17-18
Seite(n): 2559
Seiten bis: 2568
Erscheinungsdatum: 2016
Verlag / Hrsg. Institution: Wiley
ISSN: 0962-1067
1365-2702
Sprache: Englisch
Schlagwörter: Chronic illness; Hepatic encephalopathy; Informal caregiver; Lived experience; Liver cirrhosis; Nursing
Fachgebiet (DDC): 610.73: Pflege
616: Innere Medizin und Krankheiten
Zusammenfassung: 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
Volltext Version: Publizierte Version
Lizenz (gemäss Verlagsvertrag): Lizenz gemäss Verlagsvertrag
Departement: Gesundheit
Organisationseinheit: Institut für Pflege (IPF)
Enthalten in den Sammlungen: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.


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