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


METHODS
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.


CONCLUSIONS
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.


BACKGROUND
ClinicalTrials.gov Identifier: NCT01983852.
Palliative Medicine, University Children's Hospital Zurich, Switzerland.
Eva
E
Bergstraesser
Institute of Nursing Science, University of Basel, Switzerland.|Department of Pediatrics, Inselspital Bern University Hospital, Basel, Switzerland.
Karin
K
Zimmermann
Institute of Nursing Science, University of Basel, Switzerland.
Katri
K
Eskola
Institute of Nursing Science, University of Basel, Switzerland.
Patricia
P
Luck
Institute of Higher Education and Nursing Research, University of Lausanne, Switzerland.
Anne-Sylvie
AS
Ramelet
Institute of Nursing Science, University of Basel, Switzerland.|University of Applied Sciences Bern, Health Division, Basel, Switzerland.
Eva
E
Cignacco
D002648:Child; D006301:Health Services Needs and Demand; D006801:Humans; D010372:Pediatrics; D012189:Retrospective Studies; D013557:Switzerland; D013727:Terminal Care
end-of-life care; family-centred care; nursing; paediatric palliative care; parental experiences; parental needs; perspectives of care professionals; questionnaire