Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases

• Main Authors: Karen Fratantoni (Author), Jessica Livingston (Author), Sandra E. Schellinger (Author), Samar M. Aoun (Author), Maureen E. Lyon (Author)
• Formato: Livro
• Publicado em: MDPI AG, 2022-03-01T00:00:00Z.
• Assuntos: article
• Acesso em linha: Connect to this object online.

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of their child's illness, goals of...