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Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals.
Eva Bergstraesser1, Karin Zimmermann2,3, Katri Eskola2
1Palliative Medicine, University Children's Hospital Zurich, Switzerland.
Insights
This study protocol outlines a comprehensive investigation into paediatric end-of-life care in Switzerland. It aims to gather crucial data on care practices, parental experiences, and healthcare professional perspectives to improve child palliative care.
Area of Science:
- Pediatric Palliative Care
- End-of-Life Care Research
- Healthcare Services Research
Background:
- Paediatric palliative care in Switzerland is often delivered by generalist teams lacking specialized training.
- There is a significant gap in systematic data regarding symptom management, parental involvement in decision-making, family-centered care, and the experiences of parents and healthcare professionals during a child's end-of-life phase.
- ClinicalTrials.gov Identifier: NCT01983852.
Purpose of the Study:
- To present a detailed protocol for a multi-phase study on the current practices of end-of-life care in Swiss paediatric settings.
- To systematically collect data on critical aspects of paediatric end-of-life care, addressing identified knowledge gaps.
- To inform the development and implementation of improved end-of-life care programs for children in Switzerland.
Main Methods:
- The study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), employs a retrospective, nationwide, multicentre design combining quantitative and qualitative methods.
- PELICAN I: Observational study of end-of-life care practices (last 4 weeks of life) in hospital and home settings for children (0-18 years) who died from cardiac, neurological, oncological diseases, or in the neonatal period (2011-2012).
- PELICAN II and III: Qualitative assessments of parental experiences and needs, and healthcare professionals' perspectives on end-of-life care provision.
Main Results:
- This section is not applicable as the abstract describes a study protocol, not results.
Conclusions:
- This pioneering Swiss-wide study will offer comprehensive insights into paediatric end-of-life care across diverse diagnoses.
- It will capture the perspectives of parents and healthcare professionals, highlighting their experiences and needs.
- Findings are expected to guide the development and implementation of evidence-based, child-centred end-of-life care programs throughout Switzerland.
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.
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