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dc.contributor.authorBergstraesser, E.
dc.contributor.authorZimmermann, K.
dc.contributor.authorEskola, K.
dc.contributor.authorLuck, P.
dc.contributor.authorRamelet, Anne-Sylvie
dc.contributor.authorCignacco, E.
dc.identifier.citationBergstraesser, E. and Zimmermann, K. and Eskola, K. and Luck, P. and Ramelet, A. and Cignacco, E. 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): pp. 1940-9147.

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.

dc.publisherBlackwell Publishing Ltd
dc.titlePaediatric end-of-life care needs in Switzerland: Current practices, and perspectives from parents and professionals. A study protocol
dc.typeJournal Article
dcterms.source.titleJournal of Advanced Nursing
curtin.departmentSchool of Nursing and Midwifery
curtin.accessStatusOpen access via publisher

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