Pediatric palliative care is care for children with life-threatening or life-limiting illnesses and their families. The care for these children is often complex due to the involvement of multiple healthcare professionals and because children frequently receive care both at home and in the hospital.
Person-centered care, which is tailored to the wishes and needs of the child and family, is crucial. This thesis of Chantal Joren sought 1) to improve the coordination, continuity and quality of pediatric palliative care by further development and implementation of the Individual Care Plan, by 2) obtaining a better understanding of the application, including barriers and facilitators, of an Individual Care Plan in pediatric palliative care, and 3) identifying the essential content of an Individual Care Plan for pediatric palliative care.
The study demonstrated that the Individual Care Plan is a unique document that can support person-centered care, shared decision-making, advance care planning, interdisciplinary collaboration, coordination and continuity of care and education in pediatric palliative care. It thereby distinguishes itself from other existing care plans in pediatric palliative care that mainly focus on one element of care or on a specific disease. By using the Individual Care Plan from the onset of a life-limiting or life-threatening illness, it will enhance the quality of pediatric palliative care.
