Health transition experiences of Canadian ventilator-assisted adolescents and their family caregivers: A qualitative interview study
Bibliographic record
Abstract
PURPOSE: No studies have explored the experiences of Canadian mechanical ventilator-assisted adolescents (VAAs) living at home as they transition from paediatric to adult health providers. A better understanding of the needs of this growing population is essential to provide transition services responsive to VAAs and caregiver-identified needs. METHODS: We conducted semistructured telephone interviews with adolescents and family caregivers who had recently initiated or completed transition to adult care recruited from three Canadian university-affiliated paediatric home ventilation programs. We analyzed transcripts using a theoretical framework for understanding facilitators and barriers to transition. RESULTS: We interviewed 18 individuals representing 14 episodes of paediatric to adult transition. Participants identified early planning, written informational materials and joint paediatric-adult provider-family transition meetings as facilitators of care transition to adult services and providers. Barriers included insufficient information, limited access to interprofessional (nursing and allied health) providers and reduced funding or health services. Barriers resulted in service disruption and a sense of 'medical homelessness'. While most families related a positive transition to a new 'medical home', families caring for VAAs with moderate-to-severe cognitive and/or physical dependence more commonly reported transition difficulties. CONCLUSIONS: Important opportunities exist to enable improvements in the transition experiences of VAAs and their family caregivers. To maximize service continuity during paediatric to adult transition, future research should focus on transition navigator roles, interprofessional health outreach and the needs of families caring for VAAs with cognitive and physical deficits.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.004 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".