Cent Eur J Nurs Midw 2023, 14(3):943-955 | DOI: 10.15452/cejnm.2023.14.0011

I’ll do everything for him / her: the experiences of family caregivers caring for a dying patient at home (a phenomenological qualitative approach)

Lenka Štureková, Šárka Šaňáková
Department of Nursing, Faculty of Health Sciences, Palacký University, Olomouc, Czech Republic

Aim: The aim was to understand the lived experiences of family caregivers caring for a dying patient at home. Design: A qualitative phenomenological approach was used. Methods: Data were collected between September and December 2018. Data collection was took the form of in-depth interviews with family caregivers (n = 4), followed by the use of interpretative phenomenological analysis (IPA). Results: Five main themes were identified in terms of which family caregivers described their experience: the Role of caregiver; I’ll do everything for him / her; Support; “Time out” after death; and Benefits of care. The family caregivers had to establish their new caregiver roles, often they were the mainstay of the whole family. In the various areas of care they did everything for the dying person. They experienced pain, mental and physical burdens, and doubts, and spirituality was vital to them. It was important to experience support from different sources. After this experience, the caregivers needed time to release emotions after the death. Overall, the caregivers came to regard this experience as beneficial: revealing other priorities, increasing time spent with family, clarifying relationships, and changing attitudes and values. Conclusion: The study offers a unique insight into family caregivers’ experiences in the Czech Republic. In confirmation of previous results, experiences are generally similar for all caregivers and point to a need for significant improvement in the quality of support and assistance from health professionals and support from family members, particularly in the areas of practical demonstration of care, the expression of condolences, provision of pain medication, handling of formalities related to the death of a loved one (e.g., when arranging the death certificate and widow’s pension), and the sharing of emotions as they occur.

Keywords: dying, experience, family caregiver, home care, interpretative-phenomenological analysis

Received: November 2, 2022; Revised: June 16, 2023; Accepted: June 17, 2023; Prepublished online: August 21, 2023; Published: September 5, 2023  Show citation

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Štureková L, Šaňáková Š. I’ll do everything for him / her: the experiences of family caregivers caring for a dying patient at home (a phenomenological qualitative approach). Central European Journal of Nursing and Midwifery. 2023;14(3):943-955. doi: 10.15452/cejnm.2023.14.0011.
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