The evidence-base for engaging and integrating children’s voices and their families in healthcare decision-making is emerging and of critical need. In this chapter, the authors review best practices in engaging and communicating with children of all ages and their families, foundational ethical principles and decision-making constructs in pediatric care, and the role of the interdisciplinary healthcare team in supporting children and their families in finding their voices in decision-making throughout the illness continuum. The powerful, illuminating perspectives of Faith, a young adult living with cystic fibrosis, and Jen, the mother of a young boy living with a rare, progressive, metabolic condition, as well as Yong and Mateo’s clinical vignettes, interwoven throughout, highlight critical and common decision-making conflicts, challenges, and successes. Children, adolescents, young adults, families, and interdisciplinary healthcare teams must come together to develop the next generation of innovative, effective shared decision-making strategies, frameworks, skills, and tools.
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