Eva Bergstraesser1, Karin Zimmermann2,3, Katri Eskola2, Patricia Luck2, Anne-Sylvie Ramelet4, Eva Cignacco2,5. 1. Palliative Medicine, University Children's Hospital Zurich, Switzerland. 2. Institute of Nursing Science, University of Basel, Switzerland. 3. Department of Pediatrics, Inselspital Bern University Hospital, Basel, Switzerland. 4. Institute of Higher Education and Nursing Research, University of Lausanne, Switzerland. 5. University of Applied Sciences Bern, Health Division, Basel, Switzerland.
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.
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.
Authors: Karin Zimmermann; Katrin Marfurt-Russenberger; Eva Cignacco; Eva Bergstraesser Journal: BMC Palliat Care Date: 2022-05-04 Impact factor: 3.113
Authors: Karin Zimmermann; Eva Bergstraesser; Sandra Engberg; Anne-Sylvie Ramelet; Katrin Marfurt-Russenberger; Nicolas Von der Weid; Chantal Grandjean; Patricia Fahrni-Nater; Eva Cignacco Journal: BMC Palliat Care Date: 2016-03-09 Impact factor: 3.234
Authors: Karin Zimmermann; Eva Cignacco; Sandra Engberg; Anne-Sylvie Ramelet; Nicolas von der Weid; Katri Eskola; Eva Bergstraesser; Marc Ansari; Christoph Aebi; Reta Baer; Maja Beck Popovic; Vera Bernet; Pierluigi Brazzola; Hans Ulrich Bucher; Regula Buder; Sandra Cagnazzo; Barbara Dinten; Anouk Dorsaz; Franz Elmer; Raquel Enriquez; Patricia Fahrni-Nater; Gabi Finkbeiner; Bernhard Frey; Urs Frey; Jeannette Greiner; Ralph-Ingo Hassink; Simone Keller; Oliver Kretschmar; Judith Kroell; Bernard Laubscher; Kurt Leibundgut; Reta Malaer; Andreas Meyer; Christoph Stuessi; Mathias Nelle; Thomas Neuhaus; Felix Niggli; Geneviève Perrenoud; Jean-Pierre Pfammatter; Barbara Plecko; Debora Rupf; Felix Sennhauser; Caroline Stade; Maja Steinlin; Lilian Stoffel; Karin Thomas; Christian Vonarburg; Rodo von Vigier; Bendicht Wagner; Judith Wieland; Birgit Wernz Journal: BMC Pediatr Date: 2018-02-16 Impact factor: 2.125
Authors: Gregorio Zuniga-Villanueva; Jorge Alberto Ramos-Guerrero; Monica Osio-Saldaña; Jessica A Casas; Joan Marston; Regina Okhuysen-Cawley Journal: Children (Basel) Date: 2021-03-23