How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study

Background: The end of life and death have changed from being issues managed within the family, assumed as part of life, to occur within health institutions for the majority of patients. The amount of patients dying at home has decreased, and the roles of families and communities in death and dying...

Full description

Bibliographic Details
Main Authors: E. Begoña García-Navarro, Sonia Garcia Navarro, María José Cáceres-Titos
Format: Article
Language:English
Published: MDPI AG 2023-12-01
Series:Nursing Reports
Subjects:
Online Access:https://www.mdpi.com/2039-4403/13/4/141
_version_ 1827573924033986560
author E. Begoña García-Navarro
Sonia Garcia Navarro
María José Cáceres-Titos
author_facet E. Begoña García-Navarro
Sonia Garcia Navarro
María José Cáceres-Titos
author_sort E. Begoña García-Navarro
collection DOAJ
description Background: The end of life and death have changed from being issues managed within the family, assumed as part of life, to occur within health institutions for the majority of patients. The amount of patients dying at home has decreased, and the roles of families and communities in death and dying have become involuted, threatening related traditions and knowledge. As a result, a need to promote the end of life at home in this new self-serving society has arisen. In that context, the main objective of this study was to find out what patients and their families need during the end-of-life process in order to feel effectively accompanied at this time. Methods: With that objective, a descriptive qualitative study was conducted via the content analysis of data from semi-structured interviews and focus groups. This research adhered to the COREQ guidelines. The sample consisted of 36 informants selected via intentional sampling of family members and patients integrated into the Comprehensive Palliative Care Process (PAI Paliativos). Results: The results suggest the existence of several common needs such as communication and presence, including the conspiracy of silence as an important factor generating suffering for both. However, there are specific needs such as autonomy, dignity, and respect for patients, which must be taken into account. Conclusions: The results of this study will allow us to establish intervention strategies for effective accompaniment of patients’ family members at the end of life and the avoidance of ethnocentrism in this process. This study was retrospectively registered with the (nursrep-1194226) on the (21 April 2023).
first_indexed 2024-03-08T20:28:02Z
format Article
id doaj.art-7540317d630546048f7f834a8a3a34c4
institution Directory Open Access Journal
issn 2039-439X
2039-4403
language English
last_indexed 2024-03-08T20:28:02Z
publishDate 2023-12-01
publisher MDPI AG
record_format Article
series Nursing Reports
spelling doaj.art-7540317d630546048f7f834a8a3a34c42023-12-22T14:29:46ZengMDPI AGNursing Reports2039-439X2039-44032023-12-011341706172010.3390/nursrep13040141How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative StudyE. Begoña García-Navarro0Sonia Garcia Navarro1María José Cáceres-Titos2Department of Nursing, University of Huelva, 21007 Huelva, SpainDepartment of Nursing, University of Huelva, 21007 Huelva, SpainDepartment of Nursing, University of Huelva, 21007 Huelva, SpainBackground: The end of life and death have changed from being issues managed within the family, assumed as part of life, to occur within health institutions for the majority of patients. The amount of patients dying at home has decreased, and the roles of families and communities in death and dying have become involuted, threatening related traditions and knowledge. As a result, a need to promote the end of life at home in this new self-serving society has arisen. In that context, the main objective of this study was to find out what patients and their families need during the end-of-life process in order to feel effectively accompanied at this time. Methods: With that objective, a descriptive qualitative study was conducted via the content analysis of data from semi-structured interviews and focus groups. This research adhered to the COREQ guidelines. The sample consisted of 36 informants selected via intentional sampling of family members and patients integrated into the Comprehensive Palliative Care Process (PAI Paliativos). Results: The results suggest the existence of several common needs such as communication and presence, including the conspiracy of silence as an important factor generating suffering for both. However, there are specific needs such as autonomy, dignity, and respect for patients, which must be taken into account. Conclusions: The results of this study will allow us to establish intervention strategies for effective accompaniment of patients’ family members at the end of life and the avoidance of ethnocentrism in this process. This study was retrospectively registered with the (nursrep-1194226) on the (21 April 2023).https://www.mdpi.com/2039-4403/13/4/141palliative careend-of-life carechronicityagingelderly carenursing homes
spellingShingle E. Begoña García-Navarro
Sonia Garcia Navarro
María José Cáceres-Titos
How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
Nursing Reports
palliative care
end-of-life care
chronicity
aging
elderly care
nursing homes
title How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
title_full How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
title_fullStr How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
title_full_unstemmed How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
title_short How to Manage the Suffering of the Patient and the Family in the Final Stage of Life: A Qualitative Study
title_sort how to manage the suffering of the patient and the family in the final stage of life a qualitative study
topic palliative care
end-of-life care
chronicity
aging
elderly care
nursing homes
url https://www.mdpi.com/2039-4403/13/4/141
work_keys_str_mv AT ebegonagarcianavarro howtomanagethesufferingofthepatientandthefamilyinthefinalstageoflifeaqualitativestudy
AT soniagarcianavarro howtomanagethesufferingofthepatientandthefamilyinthefinalstageoflifeaqualitativestudy
AT mariajosecacerestitos howtomanagethesufferingofthepatientandthefamilyinthefinalstageoflifeaqualitativestudy