Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet,…
OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative,…
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for…
ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety,…
