In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding …

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems …

Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal …