Health care providers‘ experiences and needs when delivering end-of-life care to children – a qualitative study

Eva Cignacco; Eva Bergsträsser; Patricia Luck

Prof. Anne-Sylvie Ramelet, Universität Lausanne | Prof. Dr. med. Mario Bianchetti, Ospedale regionale di Bellinzona e Valli

Zusammenarbeit mit
Universitätskinderspital Zürich Medizinische Kinderklinik, Inselspital Bern Institut de Formation et recherche en science infirmières Lausanne Ospedale regionale di Bellinzona

2013 bis 2015


Paediatric end-of-life care (EOL care) refers to the care of a dying child and its family in the final weeks before death. This kind of care entails challenging tasks for the involved health care professionals (HCPs). When providing EOL care, HCPs are faced with complex requirements, such as the communication with the child and the family, burdening decision-making and adequate symptom management. In order to provide the best possible EOL care, many HCPs express the need for inter-professional support and tailored education. Little is known about HCPs’ experiences and needs when providing paediatric EOL care in Switzerland.

The aim of the presented study is to describe experiences and needs of HCPs in paediatric EOL care in Switzerland. The findings will allow to stipulate recommendations for tailored education and professional support for HCPs working with in- and outpatients and for educational health institutions as well.

A qualitative approach will be used. The data will be gathered through 6 interdisciplinary focus group interviews with HCPs throughout Switzerland. Participating HCPs need to have cared for at least one dying child during the past year. The data will be analysed by means of “Thematic analysis”. This is an approach using an iterative process to thoroughly elaborate the meaning of a text and build a thematic map of the phenomenon under investigation.

In order to develop appropriate measures of education and support for HCPs at a national level, it is essential to explore their experiences and needs to reveal facilitators and barriers they are confronted with when caring for a dying child.