What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change

Abstract

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing. We transcribed and coded the responses to uncover salient themes. We uncovered 2 major themes from families with direct applicability to systems of care: “What’s Missing – Human Dignity” and “What Families Really Need and Recommend in Care.” Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centering the whole child, building relationships of trust and communication, and valuing family-to-family supports to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis. The highly untenable cost of navigating dehumanizing systems of care reduces quality of life and wellbeing and must be transformed.