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The Experiences of Family Caregivers at the End of Life

Suffering, Compassion Satisfaction and Support of Health Care Professionals

Experiences of Caregivers at the End of Life

Ortega-Galán, Ángela María PhD, MSN, RN; Ruiz-Fernández, María Dolores PhD, MSN, RN; Carmona-Rega, María Inés RN; Cabrera-Troya, José RN; Ortíz-Amo, Rocío MSc; Ibáñez-Masero, Olivia PhD, MSc, RN

Journal of Hospice & Palliative Nursing: October 2019 - Volume 21 - Issue 5 - p 438–444
doi: 10.1097/NJH.0000000000000586
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A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

Ángela María Ortega-Galán, PhD, MSN, RN, is lecturer, Department of Nursing, University of Huelva, Spain.

María Dolores Ruiz-Fernández, PhD, MSN, RN, is lecturer, Department of Nursing, Physiotherapy and Medicine, University of Almería, Spain.

María Inés Carmona-Rega, RN, is case management nurse, ZBS Santa Fe. Granada Metropolitan District, Granada, Spain.

José Cabrera-Troya, RN, is nurse in Primary Care, AGS Sevilla Sur, Spain.

Rocío Ortíz-Amo, MSc, is social worker, Department of Nursing, Physiotherapy and Medicine, University of Almería, Spain.

Olivia Ibáñez-Masero, PhD, MSc, RN, is lecturer, Department of Nursing, University of Huelva, Spain.

Address correspondence to María Dolores Ruiz-Fernández, PhD, MSN, RN, Department of Nursing Science, Physiotherapy and Medicine, University of Almeria, s/n, Sacramento Road, 04120 La Cañada, Almería, Spain (mrf757@ual.es).

This project was subsidized by the Ministry of Health and Social Welfare, Andalusia (Spain): “The Process of Dying in Andalusia. Qualitative Analysis From the Perspective of Informal Caregivers,” PI-0643/2012; and the Andalusian Association of Community Nursing. The members of the Research Group are also in the Working Group on Bioethics and Humanization of this Association.

The authors have no conflicts of interest to disclose.

Online date: July 17, 2019

© 2019 by The Hospice and Palliative Nurses Association.