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…
Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which…
OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…
