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Tough transitions: Family caregiver experiences with a pediatric long‐term ventilation discharge pathway
Author(s) -
Chiang Jackie,
Karim Allia,
Hoffman Andrea,
DrydenPalmer Karen,
Keilty Krista,
Syed Faiza,
Janevski Joanna,
Dutta Tilak,
Fellin Maryanne,
Lindsay Sally,
Beaune Laura,
Amin Reshma
Publication year - 2021
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.25588
Subject(s) - thematic analysis , medicine , perception , nursing , rehabilitation , qualitative research , psychology , physical therapy , social science , neuroscience , sociology
Objectives Discharging a child home on long‐term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. Methods We conducted 11 semi‐structured interviews with FCs. Interviews focused on FC's 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 three fathers of ten 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.