Tough Transitions: Family Caregiver Experiences with a Pediatric Long
Term Ventilation Discharge Pathway
Abstract
Objectives: Discharging a child home on long term ventilation (LTV) via
tracheostomy is complex and involves multiple healthcare providers
across healthcare sectors. To date, patient and family feedback of a
newly developed LTV discharge pathway has been anecdotal. Our objective
was to explore the perceptions of family caregivers (FCs) that have
completed the LTV pathway to home with respect to their: (1) experience
with transitions across the pathway (2) perceptions of competency
attainment and, (3) viewed opportunities for improvement. Methods: We
conducted 11 semi structured interviews with FCs. Interviews focused on
FCs experience with the training process, perception of competency from
a knowledge and skill perspective and opportunities for improvement.
Interviews were audiotaped, transcribed verbatim, coded and analyzed
using an inductive thematic analysis approach. Results: Eight mothers
and 3 fathers of 10 children participated. Six primary themes were
identified: 1) making an informed decision, 2) transitioning to
rehabilitation, 3) building capacity for self-care, 4) coordinating case
management, 5) readying for discharge home and, 6) experiencing home
care. Conclusion: Overall, FCs felt that the preparation and transition
support obtained through the application of a standardized LTV discharge
pathway allowed successful attainment of new knowledge and skills
necessary to care for their child with LTV at home.