• Eva Bergstraesser, Karin Zimmermann, Katri Eskola, Patricia Luck, Anne-Sylvie Ramelet, and Eva Cignacco.
• Palliative Medicine, University Children's Hospital Zurich, Switzerland.
• J Adv Nurs. 2015 Aug 1; 71 (8): 1940-7.

AimTo present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland.BackgroundIn 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.DesignThis retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry.MethodsThe 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.ConclusionThis 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 RegistrationClinicalTrials.gov Identifier: NCT01983852.© 2015 John Wiley & Sons Ltd.

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