Parent Perspectives on the Child Experience of Pediatric Home Ventilation via Tracheostomy.

Abstract

Parents facing the decision of whether to initiate pediatric mechanical ventilation via tracheostomy ("home ventilation") report wanting information about what to expect for life at home for their child. The study objective is to explore parent descriptions of the child experience of home ventilation to increase awareness for clinicians in the inpatient setting caring for these children. Semistructured interviews were conducted using purposive sampling of parents with children who initiated home ventilation within the previous 5 years from 3 geographically diverse academic medical centers. We interviewed 21 families from 3 geographic regions in the United States. About 75% of children had respiratory failure in the first year of life, 80% had medical complexity, and half had severe neurologic impairment. Five domains emerged regarding parent perceptions of their child's experience of home ventilation: (1) health and well-being; (2) development; (3) adaptation; (4) mobility and travel; and (5) relationships. Within each domain, several themes were identified. For each theme, there was a positive and negative subtheme to illustrate how the child's experience was modified by home ventilation. Parent descriptions were generally positive, however, in all domains and to varying degrees, parents expressed negative aspects of home ventilation. By providing information about the realistic experiences of children using home ventilation, clinicians can support families in the inpatient setting as they face this complex decision. Balanced information about home ventilation is critical to enhancing clinician counseling so that families may benefit from the perspectives of experienced parents.