Lived experiences of caregivers with infants treated at home with continuous invasive or noninvasive ventilation

Abstract Rationale Caring for children dependent upon continuous invasive ventilation in the home setting requires extensive expertise, coordination, and can result in impaired caregiver quality of life. Less is known regarding the experiences of caregivers with children requiring continuous noninvasive ventilation. Objectives To evaluate caregiver experiences with invasive and noninvasive home mechanical ventilation, and to compare parental quality of life based on the child's mode of ventilation. Methods Caregivers of infants who were discharged home with continuous ventilatory support were recruited to complete semi‐structured qualitative interviews. Interviews explored their decision‐making process, the transition to home, and health related quality of life. Results Caregivers of 16 children were interviewed, of whom eight were treated with continuous invasive ventilation, and eight with continuous noninvasive ventilation. The decision to pursue home ventilation in both groups was greatly influenced by the desire to be discharged and reunite the family at home. Following the transition to home, caregivers from both groups described high rates of insomnia, emotional distress, work disruption and familial hardship. Despite this, parents were overwhelmingly pleased with the decision to proceed with home ventilation and perceived their children to be living enriched lives outside of the hospital. Factors associated with easing the transition to home were in‐hospital training and the presence of a robust support system. Conclusions Lives of families with children dependent on continuous mechanical ventilation are characterized by isolation, lifestyle disruption, adverse mental and physical health consequences, and impaired interpersonal relationships, irrespective of the mode of ventilation.