Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives

Objectives & hypothesis Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios. Methods Purposeful and snowball sampling identified key informant clinical providers. Survey topics included hours of home nursing received across clinical and family scenarios. Close-ended responses were analyzed using descriptive statistics and open-ended questions coded with iterative modification for major theme agreement. Results A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence. Across hypothetical medical technology scenarios, providers consistently described children receiving fewer nursing hours than the providers' ideal practice. A third (31.7%) described discharging patients without any home nursing arranged. Conclusions This HMV provider sample highlights pervasive deficiency in home nursing provision with heterogenous interpretation of what constitutes ideal home care. Family and social contextual factors are infrequently considered in nursing allocations. Provider, community health, and family stakeholders must collaborate to generate national community practice standards for children with HMV.