Electronic supplementary material
What is Known:
• In paediatric palliative care, parents are confronted with increasing caregiving demands.
• Parenting is often approached from the perspective of stress.
What is New:
• Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance.
• Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life.
• Professionals need insight into the parents’ aims and tasks from the parental perspective to strengthen parents’ resilience.