Family Perceptions of Quality of Life for Pediatric Home Ventilator Patients

Home mechanical ventilation is an alternative to institutional management for some children with chronic or degenerative respiratory and neuromuscular disorders. Over the past 20 years, Children’s Hospital of Philadelphia has enhanced its Home Care Home Ventilator Program, designed to transition hospitalized children requiring long-term mechanical ventilation safely home. Program goals include supporting patient safety, medical stability, and caregiver competence while promoting quality of life. This longitudinal quality improvement project examined perceived quality of life for families with children discharged home for the first time on mechanical ventilation. We sought to identify unmet needs related to this transition. A self-report quality-of-life survey adapted from several validated tools was completed by the primary caregiver at 3 specific times over 6 months. Repeated-measures general linear modeling examined changes over time in caregivers’ perceptions of quality of life and confidence in meeting their child’s ongoing healthcare needs. After completing the inpatient portion of the program, followed by 6 months caring for their child at home with support from the hospital’s Home Care Department and Technology Dependence Center, caregivers reported more time to attend to their own needs and family activities, less financial burden, less anxiety, and perceived improvements in their child’s health and quality of life compared with hospitalization. Based on our findings, one program change was implemented: the Home Care social worker now meets with the family prior to discharge.