PMID- 25740472
OWN - NLM
STAT- MEDLINE
DCOM- 20160415
LR  - 20150716
IS  - 1365-2648 (Electronic)
IS  - 0309-2402 (Linking)
VI  - 71
IP  - 8
DP  - 2015 Aug
TI  - Paediatric end-of-life care needs in Switzerland: current practices, and 
      perspectives from parents and professionals. A study protocol.
PG  - 1940-7
LID - 10.1111/jan.12650 [doi]
AB  - 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.
CI  - (c) 2015 John Wiley & Sons Ltd.
FAU - Bergstraesser, Eva
AU  - Bergstraesser E
AD  - Palliative Medicine, University Children's Hospital Zurich, Switzerland.
FAU - Zimmermann, Karin
AU  - Zimmermann K
AD  - Institute of Nursing Science, University of Basel, Switzerland.
AD  - Department of Pediatrics, Inselspital Bern University Hospital, Basel, 
      Switzerland.
FAU - Eskola, Katri
AU  - Eskola K
AD  - Institute of Nursing Science, University of Basel, Switzerland.
FAU - Luck, Patricia
AU  - Luck P
AD  - Institute of Nursing Science, University of Basel, Switzerland.
FAU - Ramelet, Anne-Sylvie
AU  - Ramelet AS
AD  - Institute of Higher Education and Nursing Research, University of Lausanne, 
      Switzerland.
FAU - Cignacco, Eva
AU  - Cignacco E
AD  - Institute of Nursing Science, University of Basel, Switzerland.
AD  - University of Applied Sciences Bern, Health Division, Basel, Switzerland.
LA  - eng
SI  - ClinicalTrials.gov/NCT01983852
PT  - Journal Article
PT  - Multicenter Study
PT  - Research Support, Non-U.S. Gov't
DEP - 20150305
PL  - England
TA  - J Adv Nurs
JT  - Journal of advanced nursing
JID - 7609811
SB  - IM
MH  - Child
MH  - *Health Services Needs and Demand
MH  - Humans
MH  - *Pediatrics
MH  - Retrospective Studies
MH  - Switzerland
MH  - *Terminal Care
OTO - NOTNLM
OT  - end-of-life care
OT  - family-centred care
OT  - nursing
OT  - paediatric palliative care
OT  - parental experiences
OT  - parental needs
OT  - perspectives of care professionals
OT  - questionnaire
EDAT- 2015/03/06 06:00
MHDA- 2016/04/16 06:00
CRDT- 2015/03/06 06:00
PHST- 2015/02/08 00:00 [accepted]
PHST- 2015/03/06 06:00 [entrez]
PHST- 2015/03/06 06:00 [pubmed]
PHST- 2016/04/16 06:00 [medline]
AID - 10.1111/jan.12650 [doi]
PST - ppublish
SO  - J Adv Nurs. 2015 Aug;71(8):1940-7. doi: 10.1111/jan.12650. Epub 2015 Mar 5.