Home Care Provision
In general, the recommendation is for a minimum of two trained primary caregivers at home, ideally with the support of a home care package that includes provision of an awake, trained caregiver that can be present at all times for a child who is chronically invasively ventilated.(14, 15, 16) This assists in reducing the risk of complications such as tracheostomy blockage or accidental decannulation and may prevent a fatal incident from equipment failure. However, it is also important to recognise that daily night carers in the home can have significant impact on family life and privacy.(15)
Comprehensive parent education is vital for successful discharge home of children receiving invasive ventilation. However, despite general guidelines on educational objectives, there is great variability in training between programs, and standards are lacking.(21) Most programs are heavily based on skilled nurses undertaking daily education of parents and carers whilst the child is still an inpatient, with some using digital resources and simulation techniques to supplement the face-to-face teaching. In their recent scoping review High et al.highlighted the need for additional research to support the design and test the effectiveness of parental education programs for children assisted by invasive mechanical ventilation at home.(21) As this population of children continues to grow, standardised education, which incorporates additional elements which go beyond the day-to-day practical skills required, such as for example, providing knowledge of the psychological and financial demands associated with caring for a child at home on invasive ventilation and strategies that may help to manage this, need to be considered to reduce long-term risks in this population of children.