Life with pediatric home ventilation: Expectations versus experience

Objectives: To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences. Study Design: Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years. Patient-Subject Selection: Purposive sampling of parents who chose home ventilation for their child within the last 5 years. Methods: Interviews were transcribed for qualitative analysis and analyzed for thematic saturation and prevalence of codes. Results: Twenty families were interviewed. Families generally reported not considering potential home life changes when facing the decision about home ventilation; instead, they worried most about medical management. These concerns reversed in importance later. Families learned medical management quickly but felt largely unprepared for the extensive changes to their home life, including isolation, altered relationships with extended family and community, effects on siblings, financial strain, and need for physical changes to their house. Families had not anticipated how much they would be affected by home healthcare as a new part of their life. Conclusions: The priorities that families consider during decisions about pediatric home ventilation may not be aligned with the actual home experience of this technology. Given that the success of home ventilation largely rests with the family's care, family expectations for home life adaptations must be augmented, as should postdischarge supports for families with complex home care experiences.