Ortega-Galán Ángela María, Ruiz-Fernández María Dolores, Carmona-Rega María Inés, Cabrera-Troya José, Ortíz-Amo Rocío, Ibáñez-Masero Olivia
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.
J Hosp Palliat Nurs. 2019 Oct;21(5):438-444. doi: 10.1097/NJH.0000000000000586.
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.
有尊严的死亡受到为患者提供的护理质量的影响。本研究的目的是通过家庭护理人员的第一手经验和见解，确定与临终时为绝症患者提供护理相关的关键要素。这项多中心定性研究基于诠释现象学的范式。参与者是被确定为主要护理人员的绝症患者的亲属。组织了五个讨论小组和41次深入访谈，共有81名参与者。访谈内容根据 Giorgi 开发的方法进行分析（《现象学心理学杂志》1997年；28(2):235 - 260）。结果表明存在三个维度：护理人员的痛苦、对所提供护理的同情满足感以及医疗保健专业人员的支持。了解提供临终护理的家庭成员的经历有助于改善护理并赋予死亡尊严。卫生和社会系统必须提供涵盖所需护理不同方面的全面援助。卫生专业人员在照顾这些患者及其家人方面占据着特殊地位。
