Opportunities to Improve Care Processes for Ventilator-Dependent Children: A Single-Center Study.

Objective: Children with chronic ventilator dependence are a complex and heterogeneous population with unique needs. We sought input from parents, clinicians, and hospital staff to identify opportunities for process improvement during hospitalization and discharge preparation.

Methods: We conducted a qualitative study at a large referral center for children with chronic ventilator dependence. Participants included parents of children with chronic ventilator dependence, physicians, nurses, respiratory therapists, and support staff. Two group-level assessment (GLA) sessions occurred, followed by one-on-one semistructured interviews. Thematic analysis identified areas for process improvements in the care of children with chronic ventilator dependence.

Results: A total of 27 individuals participated in 2 GLA sessions followed by 9 interviews. Potential areas for process improvements included (1) acknowledging and addressing limited resources for children with long-term mechanical ventilation dependence; (2) advancing beyond a "one-size-fits-most" care model; (3) placing the patient and family at the center of care; and (4) improving support for families and staff. Families persistently noted a traumatic component of their experiences through hospitalizations and learning to care for a child with chronic ventilator dependence.

Conclusions: There are multiple opportunities for process improvement during the hospitalization of children with chronic ventilator dependence. Protocols and practices that support efficient and safe care, such as education before discharge, may require modifications to better meet family needs, address system shortcomings, and mitigate trauma.