Family-Educator Partnership in the Development of Entrustable Professional Activities in Complex Care.

Problem: Incorporating patient and family voices in the development of entrustable professional activities (EPAs) is not standard practice. Care of children with medical complexity (CMC) is an area of pediatrics that relies on family partnership, and families of CMC are ideal partners in EPA development given their expertise in their child's care and experience interacting with the health care system. The authors describe their model for partnering with families to develop EPAs and reflect on the unique contributions of family leaders to the process.

Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future.

Objectives: To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being.

Methods: Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them.

Results: As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies.

A Multistakeholder Approach to the Development of Entrustable Professional Activities in Complex Care.

Background: Care of children with medical complexity (CMC) involves unique knowledge, skills, and attitudes. Previous work has identified curricular priorities in complex care for pediatricians yet there are no established competency frameworks to guide curriculum development. We aimed to develop and appraise Entrustable Professional Activities (EPAs) for the care of CMC with multistakeholder involvement.

Empowered by Nurses.

Before Justice Hope Coleman was born, nurses in an antenatal testing center provided her parents with support and encouragement, the first steps in empowering them in their roles as parents of a child with multiple disabilities and complex medical needs. Over time, other nurses supported Justice's parents as they learned to communicate clearly and collaboratively with professionals; to provide a high level of care for their daughter in a loving, family-oriented way; and to advocate not only for Justice and their family as a whole, but also for other children and families in the healthcare system. This article describes the important role nurses played in empowering Justice's parents.