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Family Narratives About Providing End-of-Life Care at Home

Family Narratives About Providing End-of-Life Care at Home Currently, the dying process in Spain is moving to the home environment where responsibility for care falls largely on the family, thereby challenging and testing the stability of the family. Previous research has focused on the impact of illness on the primary caregiver; therefore, a knowledge gap exists. This study aimed to understand families’ unitary experiences of providing home care to terminally ill family member. Using the “Model of Interpersonal Relationship Between the Nurse and the Person/Family Cared For,” narrative research included family and individual interviews with nine families (9 groups/23 individuals). Thematic narrative analysis was used to interpret the interviews. The results highlight the impact of illness on family well-being as a whole. Family members often felt abandoned while caring for an ill family member and wished to be cared for themselves. However, their immediate community and the nurses caring for their ill family member neglected them. A paradigm shift is required by society and in home care at the end of life to better support the family. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Family Nursing SAGE

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Publisher
SAGE
Copyright
© The Author(s) 2021
ISSN
1074-8407
eISSN
1552-549X
DOI
10.1177/10748407211025579
Publisher site
See Article on Publisher Site

Abstract

Currently, the dying process in Spain is moving to the home environment where responsibility for care falls largely on the family, thereby challenging and testing the stability of the family. Previous research has focused on the impact of illness on the primary caregiver; therefore, a knowledge gap exists. This study aimed to understand families’ unitary experiences of providing home care to terminally ill family member. Using the “Model of Interpersonal Relationship Between the Nurse and the Person/Family Cared For,” narrative research included family and individual interviews with nine families (9 groups/23 individuals). Thematic narrative analysis was used to interpret the interviews. The results highlight the impact of illness on family well-being as a whole. Family members often felt abandoned while caring for an ill family member and wished to be cared for themselves. However, their immediate community and the nurses caring for their ill family member neglected them. A paradigm shift is required by society and in home care at the end of life to better support the family.

Journal

Journal of Family NursingSAGE

Published: Feb 1, 2022

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