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

Détails

ID Serval
serval:BIB_18CB294C872D
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.
Périodique
Journal of Advanced Nursing
Auteur(s)
Bergstraesser E., Zimmermann K., Eskola K., Luck P., Ramelet A.S., Cignacco E.
ISSN
1365-2648 (Electronic)
ISSN-L
0309-2402
Statut éditorial
Publié
Date de publication
2015
Volume
71
Numéro
8
Pages
1940-1947
Langue
anglais
Notes
Publication types: Journal Article ; Multicenter Study ; Research Support, Non-U.S. Gov't
Publication Status: ppublish
Résumé
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.
Mots-clé
Child, Health Services Needs and Demand, Humans, Pediatrics, Retrospective Studies, Switzerland, Terminal Care
Pubmed
Web of science
Création de la notice
07/09/2015 14:20
Dernière modification de la notice
20/08/2019 12:49
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