Paediatric End of Life Care Needs in Switzerland

NCT01983852 | Completed

• 2 other identifiers: PELICAN_2012_2015KFS-3008-08-2012
• Study Type: observational
• Target: 200
• Locations: 1 country
• Sites: 1

Brief Summary

Background Children living with life-limiting conditions have always been part of the health care system. Although there have been dramatic improvements in medical care, hundreds of children continue to die annually. The field of paediatric palliative care (PPC) and end-of-life (EOL) care is based on the principle that an interdisciplinary team should care for patients and their families. However, evidence on how to provide optimal PPC and EOL care covering the needs of children and their families is scarce and lags substantially behind that in the adult world. Few is known on how EOL care - defined as the last four weeks of life in this study - is presently provided in the Swiss health setting. The presented study Paediatric End-of-LIfe CAre Needs in Switzerland \[PELICAN\]) covers paediatric EOL care and will contribute to a comprehensive understanding of EOL care in Switzerland by analysing retrospectively medical charts of children/young people between 0 - 18 years who died in the years 2010 and 2011 in Switzerland. A survey instrument will be developed and pilot tested to assess the perspectives of families who have experienced the loss of a child. After the development pilot testing and adaptation of the instrument a survey with parents who lost a child in the years 2010 and 2011 will take place. Furthermore, the experiences and needs of health professionals working in the field of pediatric EOL will be explored.

Conditions

Paediatric Palliative Care

Keywords

End of Life Care; Paediatric; Experiences; Needs; Current Practices

Outcome Measures

Primary Outcomes (1)

• Symptom management during the last four weeks of life in dying children aged 0-18 years.

  Outcome measure for PELICAN 1: Description of symptom management of dying children in the last four weeks of life (e.g. pain management, anxiety, delirium). Outcome measure for PELICAN 2: Parent's experiences and needs during the End of Life Care of their child (e.g. involvement in decision making processes, consideration of family needs). Outcome measure for PELICAN 3:Professional's experiences and needs in Paediatric End of Life Care (e.g. supervision, specialised education).

  Last 4 weeks of life in dying children

Study Arms (1)

1

Children during End of Life Care

Eligibility Criteria

• Age: Up to 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

Children between 0-18 years of age dying due to a chronic condition

You may qualify if:

• All children who died in Switzerland in the years 2011 and 2012 due to an oncological, cardiological, neurological condition or during the neonatal phase
• Children and their parents being residents in Switzerland

You may not qualify if:

• No mastery of the German, Italian or French language
• Not resident in Switzerland

Sponsors & Collaborators

• University of Basel: lead
• University Children's Hospital, Zurich: collaborator
• University Children's Hospital Bern: collaborator
• University Children's Hospital Basel: collaborator
• Centre Hospitalier Universitaire Vaudois: collaborator
• University Hospital, Geneva: collaborator
• University of Lausanne: collaborator
• Ospedale Regionale Bellinzona e Valli: collaborator

Study Sites (1)

University of Basel

Basel, Basel, 4058, Switzerland

Location

Related Publications (3)

• Eskola K, Bergstraesser E, Zimmermann K, Cignacco E. Paediatric end-of-life care in the home care setting (PELICAN HOME)--a mixed methods study protocol. J Adv Nurs. 2015 Jan;71(1):204-13. doi: 10.1111/jan.12463. Epub 2014 Jun 9.

  PMID: 24909918 BACKGROUND

• Zimmermann K, Eskola K, Dorsaz A. [End of life care in pediatrics: when children die]. Krankenpfl Soins Infirm. 2014;107(3):38-9. No abstract available. German.

  PMID: 24683798 BACKGROUND

• Bergstraesser E, Zimmermann K, Eskola K, Luck P, Ramelet AS, Cignacco E. Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol. J Adv Nurs. 2015 Aug;71(8):1940-7. doi: 10.1111/jan.12650. Epub 2015 Mar 5.

  PMID: 25740472 BACKGROUND

Study Officials

• Eva Cignacco, PD Phd

  University of Basel

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: PD, Phd

Study Record Dates

• First Submitted: October 31, 2013
• First Posted: November 14, 2013
• Study Start: June 1, 2012
• Primary Completion: June 1, 2015
• Study Completion: June 1, 2015
• Last Updated: March 22, 2017

Record last verified: 2017-03

Locations

CH (1)