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Communicating Health Information at the End of Life: The Caregivers’ Perspectives

1
Care Unit, University Hospital Complex of Huelva, 21005 Huelva, Spain
2
Granada District, Andalusian Health Service, 18016 Granada, Spain
3
Department of Nursing, Physiotherapy, and Medicine, University of Almería, 04120 Almería, Spain
4
South Seville HMA, Andalusian Health Service, 41014 Seville, Spain
5
Department of Nursing, University of Huelva, 21007 Huelva, Spain
*
Author to whom correspondence should be addressed.
Int. J. Environ. Res. Public Health 2019, 16(14), 2469; https://doi.org/10.3390/ijerph16142469
Received: 22 May 2019 / Revised: 4 July 2019 / Accepted: 10 July 2019 / Published: 11 July 2019
(This article belongs to the Section Health Care Sciences & Services)
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Abstract

Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity. Objective: To understand caregivers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications. Results: Four dimensions of the dying process emerged: differences in caregivers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life. View Full-Text
Keywords: information; end of life; humanization; health care system; qualitative research information; end of life; humanization; health care system; qualitative research
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
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Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Caregivers’ Perspectives. Int. J. Environ. Res. Public Health 2019, 16, 2469.

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