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dc.contributor.authorIbáñez Masero, Olivia
dc.contributor.authorCarmona Rega, Inés María
dc.contributor.authorRuiz Fernández, María Dolores
dc.contributor.authorOrtiz Amo, Rocío
dc.contributor.authorCabrera Troya, José
dc.contributor.authorOrtega Galán, Ángela María
dc.identifier.citationIbañez 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:
dc.description.abstractHealth 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: di erences 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 su ering 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.es_ES
dc.description.sponsorshipProject 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.
dc.relation.isversionofPublisher’s versión
dc.rightsAtribución-NoComercial-SinDerivadas 3.0 España*
dc.subject.otherEnd of lifees_ES
dc.subject.otherHealth care systemes_ES
dc.subject.otherQualitative researches_ES
dc.titleCommunicating Health Information at the End of Life: The Caregivers’ Perspectiveses_ES

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