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...

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Detalles Bibliográficos
Autores: Ibáñez Masero, Olivia, Carmona Rega, Inés María, Ruiz Fernández, María Dolores, Ortiz Amo, Rocío, Cabrera Troya, José, Ortega Galán, Ángela María
Tipo de recurso: artículo
Fecha de publicación:2019
País:España
Institución:Universidad de Huelva (UHU)
Repositorio:Arias Montano. Repositorio Institucional de la Universidad de Huelva
Idioma:inglés
OAI Identifier:oai:ariasmontano.uhu.es:10272/16730
Acceso en línea:http://hdl.handle.net/10272/16730
Access Level:acceso abierto
Palabra clave:Information
End of life
Humanization
Health care system
Qualitative research
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spelling Communicating Health Information at the End of Life: The Caregivers’ PerspectivesIbáñez Masero, OliviaCarmona Rega, Inés MaríaRuiz Fernández, María DoloresOrtiz Amo, RocíoCabrera Troya, JoséOrtega Galán, Ángela MaríaInformationEnd of lifeHumanizationHealth care systemQualitative researchHealth 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.MDPI20192019-01-0120192019-01-01journal articlehttp://purl.org/coar/resource_type/c_6501VoRhttp://purl.org/coar/version/c_970fb48d4fbd8a85info:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10272/16730reponame:Arias Montano. Repositorio Institucional de la Universidad de Huelvainstname:Universidad de Huelva (UHU)Inglésengopen accesshttp://purl.org/coar/access_right/c_abf2Atribución-NoComercial-SinDerivadas 3.0 Españahttp://creativecommons.org/licenses/by-nc-nd/3.0/es/info:eu-repo/semantics/openAccessoai:ariasmontano.uhu.es:10272/167302026-06-02T14:58:11Z
dc.title.none.fl_str_mv Communicating Health Information at the End of Life: The Caregivers’ Perspectives
title Communicating Health Information at the End of Life: The Caregivers’ Perspectives
spellingShingle Communicating Health Information at the End of Life: The Caregivers’ Perspectives
Ibáñez Masero, Olivia
Information
End of life
Humanization
Health care system
Qualitative research
title_short 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_sort Communicating Health Information at the End of Life: The Caregivers’ Perspectives
dc.creator.none.fl_str_mv Ibáñez Masero, Olivia
Carmona Rega, Inés María
Ruiz Fernández, María Dolores
Ortiz Amo, Rocío
Cabrera Troya, José
Ortega Galán, Ángela María
author Ibáñez Masero, Olivia
author_facet Ibáñez Masero, Olivia
Carmona Rega, Inés María
Ruiz Fernández, María Dolores
Ortiz Amo, Rocío
Cabrera Troya, José
Ortega Galán, Ángela María
author_role author
author2 Carmona Rega, Inés María
Ruiz Fernández, María Dolores
Ortiz Amo, Rocío
Cabrera Troya, José
Ortega Galán, Ángela María
author2_role author
author
author
author
author
dc.contributor.none.fl_str_mv
dc.subject.none.fl_str_mv Information
End of life
Humanization
Health care system
Qualitative research
topic Information
End of life
Humanization
Health care system
Qualitative research
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: 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.
publishDate 2019
dc.date.none.fl_str_mv 2019
2019-01-01
2019
2019-01-01
dc.type.none.fl_str_mv journal article
http://purl.org/coar/resource_type/c_6501
VoR
http://purl.org/coar/version/c_970fb48d4fbd8a85
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv http://hdl.handle.net/10272/16730
url http://hdl.handle.net/10272/16730
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
Atribución-NoComercial-SinDerivadas 3.0 España
http://creativecommons.org/licenses/by-nc-nd/3.0/es/
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
Atribución-NoComercial-SinDerivadas 3.0 España
http://creativecommons.org/licenses/by-nc-nd/3.0/es/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv MDPI
publisher.none.fl_str_mv MDPI
dc.source.none.fl_str_mv reponame:Arias Montano. Repositorio Institucional de la Universidad de Huelva
instname:Universidad de Huelva (UHU)
instname_str Universidad de Huelva (UHU)
reponame_str Arias Montano. Repositorio Institucional de la Universidad de Huelva
collection Arias Montano. Repositorio Institucional de la Universidad de Huelva
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