Published December 2015

“Overwhelmed.” “I just can’t do it.” “Way too much.” “Confused.” “Exhausted.” “Scared to leave the hospital.” “How do I know?....”

Medical professionals know the transition from hospital to home for a sick child can be stressful for parents and caregivers—and that stress can negatively impact patient outcomes and recovery.

The Hospital-to-Home Outcomes (H2O) study conducted detailed focus groups with 61 caregivers within 30 days of a child’s release. Researchers gained compelling insights into common at-home challenges.

The study identified a four-category conceptual model to describe the “family voice” caregivers often use to relate their experiences after discharge:

  • “In a fog” (barriers to processing and acting on information)
  • “What I wish I had” (desired information and suggestions for improvement)
  • “Am I ready to go home?” (discharge readiness)
  • And “I’m home, now what?” (confidence and discharge care.)

"One surprise was the all-encompassing nature of ‘fog’ experienced by caregivers,” says Samir Shah, MD, MSCE, director of the Division of Hospital Medicine. “We know that in the hospital, parents are dealing with a variety of issues, such as stress, sleep deprivation, and balancing other responsibilities. But they described this ‘fog’ as being a factor not only during hospitalization but also after arriving home, making it difficult for them to remember important care instructions.”

Shah and Jeffrey Simmons, MD, MSc, co-led the H2O study. A grant from the Patient-Centered Outcomes Research Institute funded the work.

Using insights from the study, the Division of Hospital Medicine and the Department of Patient Services are working together to develop more innovative interventions to improve patient and family transitions.