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Paediatric end‐of‐life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol
Author(s) -
Bergstraesser Eva,
Zimmermann Karin,
Eskola Katri,
Luck Patricia,
Ramelet AnneSylvie,
Cignacco Eva
Publication year - 2015
Publication title -
journal of advanced nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.948
H-Index - 155
eISSN - 1365-2648
pISSN - 0309-2402
DOI - 10.1111/jan.12650
Subject(s) - end of life care , medicine , palliative care , observational study , nursing , health care , health professionals , qualitative research , family medicine , social science , pathology , sociology , economics , economic growth
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 CA re 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.