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


Bergstraesser, Eva; Zimmermann, Karin; Eskola, Katri; Luck, Patricia; Ramelet, Anne-Sylvie; Cignacco, Eva (2015). Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol. Journal of Advanced Nursing, 71(8):1940-1947.

Abstract

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.
TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01983852.

Abstract

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.
TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01983852.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:August 2015
Deposited On:14 Dec 2015 13:06
Last Modified:14 Feb 2018 10:01
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:0309-2402
OA Status:Closed
Publisher DOI:https://doi.org/10.1111/jan.12650
PubMed ID:25740472

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