Brief Abstract:

Children requiring long-term ventilation (LTV) at home via tracheostomy are medically complex with significant associated morbidity and mortality. Family caregivers (FC) provide ‘intensive level care’ in their homes and robust preparation is required to meet the demands of caring for such a child. Competent caregivers are essential but significant gaps in the knowledge, skills and judgement required to care for children using medical technologies have been previously documented among FCs.  The LTV discharge pathway at SickKids was developed and implemented in December 2016 to restructure and standardize the discharge process to ensure quality education and streamlined care. Our aim is to evaluate the impact of the introduction of the LTV discharge pathway on the FC’s training experience and to understand their perceptions on attainment of caregiver competency. We will conduct a qualitative program evaluation study. Semi-structured interviews (10-15) will be conducted with FCs of children initiated on LTV via tracheostomy after the implementation of the LTV discharge pathway.  We will employ an inductive, thematic analysis process to familiarize, code, and identify important themes from the text. This initiative will inform the optimization of the LTV discharge pathway to maximize support for these children and their families.

Contact Information:

Reshma Amin, MD, MSc
Staff Respirologist
Department of Paediatrics, Hospital for Sick Kids
reshma.amin@sickkids.ca 416-813-6346

Affiliated Organizations: