Family-Centered Care for Children with Abusive Head Trauma

Family adaptation to severe neurologic impairment often begins in hospital settings, where the medical care team begins to orient caregivers to alterations in the child's neurologic status. For children with abusive head trauma, there are added social dimensions that affect family adaptation throughout the inpatient stay and beyond. Principles of family-centered care are an important cornerstone of pediatric practice, yet family members whose children have severe neurologic impairment may struggle to adapt in outpatient and multidisciplinary settings, where they must assume a more active leadership role in their child's care, often without significant guidance or resources. There are numerous barriers or limitations within health care systems that may perpetuate families' experiences of isolation and difficulties accessing and managing complex care. This topical review includes the identification of family- and provider-specific navigational challenges in outpatient care, a review of available family-focused interventions, opportunities for family engagement, and potential strategies for neurology practice.