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.