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The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective

BACKGROUND: Health care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncolog...

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Autores principales: De Clercq, Eva, Rost, Michael, Rakic, Milenko, Ansari, Marc, Brazzola, Pierluigi, Wangmo, Tenzin, Elger, Bernice S.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6625075/
https://www.ncbi.nlm.nih.gov/pubmed/31296209
http://dx.doi.org/10.1186/s12904-019-0438-1
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author De Clercq, Eva
Rost, Michael
Rakic, Milenko
Ansari, Marc
Brazzola, Pierluigi
Wangmo, Tenzin
Elger, Bernice S.
author_facet De Clercq, Eva
Rost, Michael
Rakic, Milenko
Ansari, Marc
Brazzola, Pierluigi
Wangmo, Tenzin
Elger, Bernice S.
author_sort De Clercq, Eva
collection PubMed
description BACKGROUND: Health care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children’s everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive “word of mouth”. CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.
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spelling pubmed-66250752019-07-23 The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective De Clercq, Eva Rost, Michael Rakic, Milenko Ansari, Marc Brazzola, Pierluigi Wangmo, Tenzin Elger, Bernice S. BMC Palliat Care Research Article BACKGROUND: Health care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children’s everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive “word of mouth”. CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term. BioMed Central 2019-07-11 /pmc/articles/PMC6625075/ /pubmed/31296209 http://dx.doi.org/10.1186/s12904-019-0438-1 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
De Clercq, Eva
Rost, Michael
Rakic, Milenko
Ansari, Marc
Brazzola, Pierluigi
Wangmo, Tenzin
Elger, Bernice S.
The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title_full The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title_fullStr The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title_full_unstemmed The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title_short The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
title_sort conceptual understanding of pediatric palliative care: a swiss healthcare perspective
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6625075/
https://www.ncbi.nlm.nih.gov/pubmed/31296209
http://dx.doi.org/10.1186/s12904-019-0438-1
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