What is important for the care and treatment of the child, now and in the future?
Children with a serious progressive disease or condition want to receive care and treatment that suits them and their family. This applies when things are going well given the circumstances and certainly also when things are not going well.
That is why it is important for the child, parents and caregivers to share with each other how everyone views the future. What do children and families consider important in their lives? What are they hoping for? What are they afraid of? What is needed for the child and family in the future? What do the child and parents want to achieve and what not? What does the doctor or nurse think the child and parents should know? What can the healthcare provider offer the child and family based on (para)medical expertise?
Talking together about preferences and goals of care and treatment for the coming period is called Advance Care Planning. Advance Care Planning aims to tailor care and treatment to the perspective of the child and family. In one or more conversations, the child and parents, together with a doctor or nurse, explore what they consider important for the child's future. Goals of care and treatment can be shared with other healthcare providers. Treatment agreements can be made in a care plan.
IMPACT offers various resources for children, parents and caregivers to put Advance Care Planning into practice.