“It Doesn’t Have to Be Big Things”: The legacy perceptions of parents/caregivers of medically complex children

Maile T. Jones, Karen Romer, Emily D. Irwin, Kayla Black, Leslie Rhodes, Jessika C. Boles, Patient- and Family-Centered Care, Monroe Carell Jr, s Hospital at Vanderbilt, ULPS Cerebral Palsy Clinic, Le Bonheur Children, s Hospital, Department of Psychology and Human Development, Vanderbilt University

Journal of Child Health Care

Published online on November 22, 2025

Abstract

Journal of Child Health Care, Ahead of Print.
Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their ...