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Published in: BMC Palliative Care 1/2019

Open Access 01-12-2019 | Care | Research article

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

Authors: Eva De Clercq, Michael Rost, Milenko Rakic, Marc Ansari, Pierluigi Brazzola, Tenzin Wangmo, Bernice S. Elger

Published in: BMC Palliative Care | Issue 1/2019

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Abstract

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.
Footnotes
1
Switzerland is a federal state which is divided into 26 cantons. Each canton has its own cantonal constitution, approved by the federal parliament. For the current study, we obtained the approval of 4 research ethics committees.
 
2
It is difficult to adequately translate the French word “accompagnement” in English since it is deeply indebted into the Francophone culture. The notion emphasizes patients’ embeddedness in society, rather than putting the focus on their individuality. The best translation would maybe be “accompanying”, “to be a companion”.
 
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Metadata
Title
The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
Authors
Eva De Clercq
Michael Rost
Milenko Rakic
Marc Ansari
Pierluigi Brazzola
Tenzin Wangmo
Bernice S. Elger
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2019
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-019-0438-1

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