INTRODUCTION
Long term ventilation (LTV) at home via tracheostomy represents one of
the most advanced, highly specialized and complex therapies offered to
individuals outside of a hospital setting. 1,2 These
children are medically fragile with significant associated morbidity and
mortality.3,4
Notably, the caregiver burden for these families is high. Family
caregivers (FC) of children using LTV at home are tasked with providing
’intensive care’ in their homes. As such, robust FC competency-based
knowledge and skills training must take place in hospital prior to the
child’s initial discharge home. The published reported median length of
stay in hospitals for families to accomplish this preparation is broad
ranging from 46 days to 9.6 months. 3,5,6-10 A handful
of studies to date have reported barriers to achieving discharge for
this population.3,5,7,8,11-13 These have included
delays in organizational decision-making and lack of coordinated
approach to care associated with preparation to transition to home.
In partnership with key clinical stakeholders, a LTV discharge pathway
was developed in late 2016 to restructure and standardize discharge
preparation placing emphasis on ensuring quality FC learning and
minimizing system borne delay. The pathway was developed to promote safe
and timely transitions across three publicly funded but distinct health
care organizations that voluntarily collaborate to coordinate care for
children on LTV. The pathway starts with a child in an intensive care
unit at a tertiary care pediatric hospital followed by transfer to a
pediatric rehabilitation hospital and then transition to home.
Using a process mapping approach, guided by content experts, the LTV
discharge pathway was developed to outline the steps to transition a
child newly initiated on LTV from the acute care setting to home. The
pathway includes role-based tasks and graduated milestones (see Appendix
1 and 2).
To date, patient and family input into the LTV discharge pathway has
been largely anecdotal and never systematically analysed. With the goal
of informing a robust family centered LTV pathway, we deigned this study
to explore the perceptions of FCs that have completed the LTV discharge
pathway with respect to their: (1) experience with transitions across
the pathway (2) perceptions of competency attainment (knowledge and
skills acquisition) and, (3) opportunities for improvement.