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. APPROACH: After recruitment of family leaders from a national organization of families and friends of children with special health care needs, the authors used a multistage process for EPA development from June 2019 to February 2021. Family leaders were integrated throughout the process, including creating EPA descriptions, revising content across all EPAs, appraising EPAs through virtual focus groups with other key stakeholders, and finalizing and publishing EPAs. The authors used content analysis to identify recommendations for patient- and family-integrated EPA development. OUTCOMES: Family leaders and educators partnered in every phase of developing EPAs for the care of CMC, including as content experts, editors, focus group facilitators, and coauthors. Family leaders recommended substantive changes to all EPAs, including revising language, augmenting content, and modifying scope of practice. In addition, content analysis of family leaders' revisions yielded 10 recommendations to ensure that written EPA descriptions are patient- and family-centered. NEXT STEPS: The described process of EPA development for the care of CMC models how families can be integrated into competency framework development and highlights their contributions. Family leader recommendations for embedding patient and family voices in EPA descriptions can serve as a guide for EPA development in other specialties.

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. CONCLUSIONS: The health care system must systematically measure the priorities of CYSHCN and their families. It also must incorporate data on quality of life and well-being when developing services, supports, and systems that help CYSHCN and their families to flourish rather than hindering them.

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. METHODS: We recruited complex care practitioners to develop EPAs using a template for elaborating descriptive elements. A team of clinicians, educators, trainees, and family leaders refined EPAs and mapped content to the Accreditation Council for Graduate Medical Education Milestones. We conducted virtual focus groups to assess whether EPAs represented the essential skills of pediatricians caring for CMC. Focus group data were analyzed using content analysis. RESULTS: Content experts developed 11 EPAs for the care of CMC describing knowledge, skills, and attitudes required for attaining competency. EPAs were mapped to 21 of the 21 (100%) reporting pediatric milestones. Focus group participants endorsed and refined EPA content. Categories of feedback included clarifying medical knowledge, expanding on interpersonal communication skills, emphasizing systems-based practice, and affirming family partnership. CONCLUSIONS: A systematic approach to developing EPAs for the care of CMC provides a guide for curriculum development and assessment in complex care.

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.