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.