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Keywords

care, end of life, experience, family caregiver, qualitative research

 

Authors

  1. Ortega-Galan, Angela Maria PhD, MSN, RN
  2. Ruiz-Fernandez, Maria Dolores PhD, MSN, RN
  3. Carmona-Rega, Maria Ines RN
  4. Cabrera-Troya, Jose RN
  5. Ortiz-Amo, Rocio MSc
  6. Ibanez-Masero, Olivia PhD, MSc, RN

Abstract

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.