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

Journal of Advanced Nursing
Eva BergstraesserEva Cignacco

Abstract

To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. 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. This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. 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 ...Continue Reading

Associated Clinical Trials

References

Nov 14, 2000·JAMA : the Journal of the American Medical Association·K E SteinhauserJ A Tulsky
Apr 23, 2004·The New England Journal of Medicine·Bruce P HimelsteinDavid Weissman
Jul 16, 2004·The New England Journal of Medicine·Doron Gothelf, Ian J Cohen
Aug 7, 2004·Journal of Pediatric Oncology Nursing : Official Journal of the Association of Pediatric Oncology Nurses·Pamela S HindsJoann Harper
Sep 17, 2004·The New England Journal of Medicine·Ulrika KreicbergsGunnar Steineck
Apr 7, 2005·Palliative Medicine·Richard D W Hain
Sep 21, 2005·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Jennifer W MackJoanne Wolfe
Sep 27, 2005·Journal of Pediatric Nursing·David M BrowningUNKNOWN Initiative for Pediatric Palliative Care (IPPC) Investigator Team
Aug 17, 2006·Journal of Palliative Medicine·Cynda Hylton RushtonNancy Hutton
Oct 24, 2006·Critical Care Medicine·Robert D TruogJeffrey P Burns
Feb 22, 2007·JAMA : the Journal of the American Medical Association·Paul K MaciejewskiHolly G Prigerson
Jun 28, 2007·JAMA : the Journal of the American Medical Association·Chris FeudtnerTammy I Kang
Aug 1, 2007·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Ulrika C KreicbergsJoanne Wolfe
Oct 2, 2007·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Jan VickersUNKNOWN Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group
Jun 3, 2008·Der Schmerz·F CraigB Zernikow
Aug 9, 2008·BMJ : British Medical Journal·Ayelet KuperWendy Levinson
Aug 19, 2008·Death Studies·Leoniek Wijngaards-de MeijIris Dijkstra
Oct 7, 2009·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Pamela S HindsWayne L Furman
Mar 9, 2010·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Rosie Midson, Bernie Carter
Jan 29, 2011·European Journal of Pediatrics·Susanne InglinEva Bergstraesser
Apr 12, 2011·Journal of Palliative Medicine·Heather L Tubbs-CooleyChris Feudtner
May 11, 2011·Pediatrics·Chris FeudtnerJoanne Wolfe
Jul 28, 2011·Journal of Palliative Medicine·Kristin BingenBruce Himelstein
Nov 28, 2012·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Alisha KassamJoanne Wolfe
Jun 10, 2014·Journal of Advanced Nursing·Katri EskolaEva Cignacco

❮ Previous
Next ❯

Citations

Feb 25, 2020·Pediatric Critical Care Medicine : a Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies·Anne-Sylvie RameletUNKNOWN Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Consortium
Sep 1, 2020·Journal of Advanced Nursing·Marie ClancyJenny Phillimore
Mar 23, 2017·Journal of Advanced Nursing·Katri EskolaEva Cignacco
Jan 11, 2017·European Journal of Pediatrics·Cecilia HåkansonJoachim Cohen
Apr 4, 2021·Children·Gregorio Zuniga-VillanuevaRegina Okhuysen-Cawley
Aug 3, 2021·Frontiers in Pediatrics·Antonio Boan PionManya J Hendriks
Sep 18, 2021·The American Journal of Hospice & Palliative Care·Terrie Clarke, Michael Connolly

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.