RT Journal Article
T1 Communicating Health Information at the End of Life: The Caregivers’ Perspectives
A1 Ibáñez Masero, Olivia
A1 Carmona Rega, Inés María
A1 Ruiz Fernández, María Dolores
A1 Ortiz Amo, Rocío
A1 Cabrera Troya, José
A1 Ortega Galán, Ángela María
AB Health information and communication are key elements that allow patients and familymembers 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 theillness and death of family members. Methods: This qualitative study was conducted in Andalusiabased on the paradigm of hermeneutic phenomenology. Participants were caregivers who hadaccompanied a family member at the end of life for over 2 months and less than 2 years. Five nominalgroups and five discussion groups were established, and 41 in-depth interviews with 123 participantswere conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive readingwas 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: di erences in caregivers’ perceptions ofinformation and communication, a conspiracy of silence, consequences of the absence or presence ofinformation, and the need for a culture change. Conclusions: Poor management of health informationand communication at the end of life increased the su ering and discomfort of patients and theirfamilies. The culture of denying and avoiding death is still present today. A change in educationabout death would better enable health professionals to care for patients at the end of life.
PB MDPI
SN 1660-4601
YR 2019
FD 2019
LK http://hdl.handle.net/10272/16730
UL http://hdl.handle.net/10272/16730
LA eng
NO Ibañez Masero, O., Carmona Rega, I. M., Ruiz Fernández, M. D., Ortiz Amo, R., Cabrera Troya, J.,  Ortega Galán, Á. M. (2019). Communicating Health Information at the End of Life: The Caregivers’ Perspectives. International Journal of Environmental Research and Public Health, 16(14), 2469. DOI: https://doi.org/10.3390/ijerph16142469
NO Project PI-0643/2012, "The dying process in Andalusia. Qualitative analysis from the perspective of informal caregivers", was funded by the Department of Health and Social Welfare, Junta of Andalusia, Spain. In addition, the Andalusian Association of Community Nursing (ASANEC, its acronym in Spanish) has contributed to the project. The present study was conducted by the working group on Care Bioethics and Humanization of this scientific society.
DS Repositorio Institucional de la Universidad de Huelva
RD 2 jun 2026