Children requiring long-term ventilation (LTV) at home via tracheostomy are medically complex, and at high risk of experiencing serious complications. Family caregivers provide ‘intensive level care’ in their homes and need strong preparation to provide this care. Significant gaps in the knowledge, skills and judgement required to care for children using medical technologies have been previously documented among family caregivers.

The LTV discharge pathway at SickKids was developed and implemented in December 2016 to restructure and standardize the discharge process to ensure quality education for family caregivers and streamlined care. The project will evaluate the impact of introducing this LTV discharge pathway on the family caregiver’s training experience and their perceptions of their competency as caregivers. We are conducting a qualitative program evaluation using semi-structured interviews (10-15) with family caregivers of children who have experienced the LTV discharge pathway. This initiative will inform the optimization of the LTV discharge pathway to maximize support for these children and their families.