Care Beyond the Bedside: Creating Space for Families of Hospitalized Children with Medical Complexity

Prolonged hospital stays separate children from their families and adversely impact the well-being of both. Children with medical complexity (CMC) often have long hospital stays and sometimes spend months to years missing their childhoods, often alone in their rooms. Caregivers of CMC must navigate many barriers to discharge during long hospital stays, which further strains the family system. In this review, we summarize the developmental vulnerabilities of chronically hospitalized CMC and propose that the hospital environment itself confers additional risk for poor neurodevelopmental outcomes. We will discuss the opportunities for pediatric post-acute care (PPAC) hospitals to create spaces where medical treatment, developmental recovery, and family integration in care can exist simultaneously. We then describe how the Care Beyond the Bedside model developed by one PPAC hospital aims to diminish the detrimental effects of prolonged hospitalization on CMC and their families by prioritizing developmental opportunity alongside medical stability. Critical components of this care model are patient and family spaces designed for community, safety training to supervise patients away from the bedside, and investment in staffing and programming to support the model. This care model acknowledges that play and healing are inextricably linked and that children develop best when they are out of bed, participating in life with their families.