What Families of Children With Medical Complexity Say About Their Family Well-Being

Family well-being (FWB) occurs when all family members are safe, healthy, and have chances for educational advancement and economic mobility. As FWB is a paramount outcome for all families, it should be enabled by clinicians — especially for families of children with medical complexity (CMC), who spend much of their time providing medical care to their child. Yet, evidence suggests that families of CMC find existing definitions and measures of FWB to be too narrow and not reflective of their varied experiences.  

Một bài báo được xuất bản trong Nhi khoa describes a conceptual framework for improving FWB, informed by crowdsourced perspectives of families with CMC. The framework outlines that determinants of FWB are related to the family’s internal system (child, caregivers, siblings), the family’s external system (healthcare, education, employment, government/policy), and the interface between the systems. For each component, the authors share recommended actions for improving FWB. They advocate for a broad view of FWB to capture what matters to families, and for the implementation of changes to clinical care, education, and policy that are informed by family insights.