The Family CIRCLE research study is learning from 700 families of children with special healthcare needs. Families will complete five surveys that explore experiences related to being a caregiver of a child with special healthcare needs over two years. In addition to focusing on personal experience, the study also collects valuable information on the frequency […]

Family engagement in health care has long been a focus for improving systems of care, particularly for children and youth with special health care needs (CYSHCN), who represent 20 to 25 percent of U.S. children. Engaging families in systems level health research and decision-making is critical to improving care and policies. Systems level work considers […]

To measure the impact of interventions on the health and well-being of children and youth with special healthcare needs (CYSHCN) and the important subset of children with medical complexity (CMC), quality of life (QoL) is an important construct to measure. Previous work by the national CMC CoIIN found that topic areas in the literature did […]

What Family Well-Being Means for Families of Children with Medical Complexity: A Crowdsourcing Initiative Family well-being (FWB) is a key outcome for families of children with medical complexity (CMC). Though various frameworks exist for FWB, none adequately reflect the variety of ways families of CMC experience and describe it. Work by the national Collaborative Improvement […]