Parents’ experiences of their children’s medical journeys with tracheostomies: A Focus Group Study
Bibliographic record
Abstract
Objectives: Children living with a tracheostomy have among the most complex medical care needs in Canada. The focus of this study was to gain a contemporary understanding of key aspects of these children's medical journeys. Methods: We conducted a qualitative constructivist grounded theory study using semi-structured focus groups with parents whose children are living in the community with a tracheostomy. Parents were recruited from the Stollery Children's Hospital Tracheostomy Clinic, which serves a geographically wide and diverse population. Results: Three focus groups were completed, including a total of 12 participants. Key themes leading up to tracheostomy related to contextual understanding, experiences of inclusion, and perceptions of proportionality. Parents discussed the preparedness for how a tracheostomy would affect their child, their own involvement in recovery, and the education needed for their child's medical care. Navigating hospital units related to inconsistencies in care, accommodations of families' needs, and confidence in care received. Finally, living in the community was the focus of much of the participants' discussions including coping with system-related issues, limited homecare and medical support, cost of care, and connections with the broader community of parents of children with complex medical needs. All themes encircled the family's deeply felt responsibility to care for their child. Conclusions: From both patient- and family-centered care perspectives, there exist individual and systemic issues related to the care delivery for children with a tracheostomy. It is in particular in the community where there is a severe deficiency of support afforded to these children and their families.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.007 | 0.011 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.008 | 0.003 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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 source (direct Gemma or distilled Codex), 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".