Child mortality and parents’ perspectives on losing a child with a life-limiting diagnosis: Population-based studies (2020)


In recent years specialized paediatric palliative care (SPPC) has received increasing attention both from healthcare professionals (HCPs) as well as from the public in Denmark. There is a consensus that SPPC should be strengthened; however, there is some disagreement regarding the organization, structure, content and scope of it. This disagreement may be due to the lack of knowledge and insight regarding the children’s diagnoses, place of care, death and the needs of the families, which have not formerly been investigated in a Danish context.

Thus, the aim of this PhD project was to 1) examine causes and places of death in children below 18 years of age who died in the period 1994-2014; 2) investigate anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses; and 3) investigate bereaved parents’ perception of end-of life communication with healthcare professionals during their child’s life-limiting disease and imminent death.

This is the first PhD thesis in Denmark to provide an overview of causes and places of death in children and to assess bereaved parents’ needs and distress during their child’s disease, imminent death and after the loss. All the findings were published in peer reviewed journals and can be a cessed by links below.

Place of employment

PhD author

Camilla Lykke, MHP, PhD

Date and place of defense

21th January 2020, Department of Oncology, Copenhagen University Hospital


Per Sjøgren (main)
Kjeld Schmiegelow
Ola Ekholm


Responsible editor