Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol

Aim: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. Background: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic...

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Main Authors: Bergstraesser, E., Zimmermann, K., Eskola, K., Luck, P., Ramelet, Anne-Sylvie, Cignacco, E.
Format: Journal Article
Published: Blackwell Publishing Ltd 2015
Online Access:http://hdl.handle.net/20.500.11937/3947
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author Bergstraesser, E.
Zimmermann, K.
Eskola, K.
Luck, P.
Ramelet, Anne-Sylvie
Cignacco, E.
author_facet Bergstraesser, E.
Zimmermann, K.
Eskola, K.
Luck, P.
Ramelet, Anne-Sylvie
Cignacco, E.
author_sort Bergstraesser, E.
building Curtin Institutional Repository
collection Online Access
description Aim: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. Background: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. Design: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. Methods: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. Conclusion: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs.
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spelling curtin-20.500.11937-39472017-09-13T14:31:37Z Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol Bergstraesser, E. Zimmermann, K. Eskola, K. Luck, P. Ramelet, Anne-Sylvie Cignacco, E. Aim: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. Background: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. Design: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. Methods: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. Conclusion: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. 2015 Journal Article http://hdl.handle.net/20.500.11937/3947 10.1111/jan.12650 Blackwell Publishing Ltd unknown
spellingShingle Bergstraesser, E.
Zimmermann, K.
Eskola, K.
Luck, P.
Ramelet, Anne-Sylvie
Cignacco, E.
Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title_full Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title_fullStr Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title_full_unstemmed Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title_short Paediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
title_sort paediatric end-of-life care needs in switzerland: current practices, and perspectives from parents and professionals. a study protocol
url http://hdl.handle.net/20.500.11937/3947