Communicating Health Information at the End of Life: The Caregivers’ Perspectives
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 fa...
| Main Authors: | , , , , , |
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| Format: | info:eu-repo/semantics/article |
| Language: | English |
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MDPI
2020
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| Subjects: | |
| Online Access: | http://hdl.handle.net/10835/7534 |
| _version_ | 1789408395006050304 |
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| author | Ibañez Masero, Olivia Carmona Rega, Inés María Ruiz Fernández, María Dolores Ortiz Amo, Rocío Cabrera Troya, José Ortega Galán, Ángela María |
| author_facet | Ibañez Masero, Olivia Carmona Rega, Inés María Ruiz Fernández, María Dolores Ortiz Amo, Rocío Cabrera Troya, José Ortega Galán, Ángela María |
| author_sort | Ibañez Masero, Olivia |
| collection | DSpace |
| description | 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. |
| format | info:eu-repo/semantics/article |
| id | oai:repositorio.ual.es:10835-7534 |
| institution | Universidad de Cuenca |
| language | English |
| publishDate | 2020 |
| publisher | MDPI |
| record_format | dspace |
| spelling | oai:repositorio.ual.es:10835-75342023-04-12T19:17:16Z Communicating Health Information at the End of Life: The Caregivers’ Perspectives Ibañez Masero, Olivia Carmona Rega, Inés María Ruiz Fernández, María Dolores Ortiz Amo, Rocío Cabrera Troya, José Ortega Galán, Ángela María information end of life humanization health care system qualitative research 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. 2020-01-17T09:38:26Z 2020-01-17T09:38:26Z 2019-07-11 info:eu-repo/semantics/article 1660-4601 http://hdl.handle.net/10835/7534 en https://www.mdpi.com/1660-4601/16/14/2469 Attribution-NonCommercial-NoDerivatives 4.0 Internacional http://creativecommons.org/licenses/by-nc-nd/4.0/ info:eu-repo/semantics/openAccess MDPI |
| spellingShingle | information end of life humanization health care system qualitative research Ibañez Masero, Olivia Carmona Rega, Inés María Ruiz Fernández, María Dolores Ortiz Amo, Rocío Cabrera Troya, José Ortega Galán, Ángela María Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title | Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title_full | Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title_fullStr | Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title_full_unstemmed | Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title_short | Communicating Health Information at the End of Life: The Caregivers’ Perspectives |
| title_sort | communicating health information at the end of life: the caregivers’ perspectives |
| topic | information end of life humanization health care system qualitative research |
| url | http://hdl.handle.net/10835/7534 |
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