Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or...

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Autores: Reigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7, Arantzamendi-Solabarrieta, M. (María)|||/items/d0d1c9f1-f245-4195-b91a-789382469bb0, Centeno, C. (Carlos)|||/items/51b2dfa8-5e18-4188-a2f8-410672dce680
Tipo de recurso: artículo
Fecha de publicación:2020
País:España
Institución:Universidad de Navarra
Repositorio:Dadun. Depósito Académico Digital de la Universidad de Navarra
Idioma:inglés
OAI Identifier:oai:dadun.unav.edu:10171/59076
Acceso en línea:https://hdl.handle.net/10171/59076
Access Level:acceso abierto
Palabra clave:Palliative care
Medicina paliativa
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spelling Palliative care in its own discourse: a focused ethnography of professional messaging in palliative careReigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7Arantzamendi-Solabarrieta, M. (María)|||/items/d0d1c9f1-f245-4195-b91a-789382469bb0Centeno, C. (Carlos)|||/items/51b2dfa8-5e18-4188-a2f8-410672dce680Palliative careMedicina paliativaBackground Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.BMCDadun. Depósito Académico Digital Universidad de Navarra20202020-06-2520202020-01-0120202020-01-01journal articlehttp://purl.org/coar/resource_type/c_6501info:eu-repo/semantics/articleapplication/pdfhttps://hdl.handle.net/10171/59076reponame:Dadun. Depósito Académico Digital de la Universidad de Navarrainstname:Universidad de NavarraInglésengopen accesshttp://purl.org/coar/access_right/c_abf2info:eu-repo/semantics/openAccessoai:dadun.unav.edu:10171/590762026-06-21T12:47:57Z
dc.title.none.fl_str_mv Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
title Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
spellingShingle Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
Reigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7
Palliative care
Medicina paliativa
title_short Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
title_full Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
title_fullStr Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
title_full_unstemmed Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
title_sort Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care
dc.creator.none.fl_str_mv Reigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7
Arantzamendi-Solabarrieta, M. (María)|||/items/d0d1c9f1-f245-4195-b91a-789382469bb0
Centeno, C. (Carlos)|||/items/51b2dfa8-5e18-4188-a2f8-410672dce680
author Reigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7
author_facet Reigada, C. (Carla)|||/items/167fb572-0149-4bd9-afda-cdefff7151b7
Arantzamendi-Solabarrieta, M. (María)|||/items/d0d1c9f1-f245-4195-b91a-789382469bb0
Centeno, C. (Carlos)|||/items/51b2dfa8-5e18-4188-a2f8-410672dce680
author_role author
author2 Arantzamendi-Solabarrieta, M. (María)|||/items/d0d1c9f1-f245-4195-b91a-789382469bb0
Centeno, C. (Carlos)|||/items/51b2dfa8-5e18-4188-a2f8-410672dce680
author2_role author
author
dc.contributor.none.fl_str_mv Dadun. Depósito Académico Digital Universidad de Navarra
dc.subject.none.fl_str_mv Palliative care
Medicina paliativa
topic Palliative care
Medicina paliativa
description Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
publishDate 2020
dc.date.none.fl_str_mv 2020
2020-06-25
2020
2020-01-01
2020
2020-01-01
dc.type.none.fl_str_mv journal article
http://purl.org/coar/resource_type/c_6501
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv https://hdl.handle.net/10171/59076
url https://hdl.handle.net/10171/59076
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
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
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv BMC
publisher.none.fl_str_mv BMC
dc.source.none.fl_str_mv reponame:Dadun. Depósito Académico Digital de la Universidad de Navarra
instname:Universidad de Navarra
instname_str Universidad de Navarra
reponame_str Dadun. Depósito Académico Digital de la Universidad de Navarra
collection Dadun. Depósito Académico Digital de la Universidad de Navarra
repository.name.fl_str_mv
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