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.