Caregiver-informed meta-synthesis of caregivers’ experiences with tracheostomy decision-making in pediatrics
Bibliographic record
Abstract
Introduction: Family-caregivers facing the decision of a tracheostomy for their child must consider many factors beyond the medical procedure itself, such as quality of life, personal values, and overall care goals. Objective: This study aimed to synthesize the available qualitative literature exploring family-caregivers' experiences regarding decision-making about tracheostomy for children. Methods: We conducted a systematic review and meta-synthesis of qualitative studies exploring family-caregivers' experiences with tracheostomy decision-making for their children. Four parents with lived experience of having to make decisions about tracheostomy for their child were co-investigators for this work. An experienced librarian developed search strategies to systematically search databases for eligible studies. Two researchers independently screened, extracted and conducted thematic analyses of all the included studies. Researchers and parent partners discussed the identified themes, conceptualized them into categories and crafted a coherent narrative that was larger than the individual contributions of each study. Results: Seventeen studies were included in the meta-synthesis. Our analysis generated seven themes: (1) the initial reaction; (2) what's going to happen to my child; (3) a place for hope; (4) taking on a new role; (5) how are we going to pay the bills; (6) navigating changing relationships; and (7) a new normal: adjusting to life at home. The identified themes indicated that family-caregivers often consider not only the immediate need to extend their child's life during decision-making but also the long-lasting implications for their child's future, their own roles as caregivers, and the impact on their family as a whole. Conclusion: The qualitative literature provides valuable insights into the multifaceted challenges faced by family-caregivers during decision-making and the critical role of healthcare professionals in supporting families through this journey beyond the initial decision.
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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 | 0.093 | 0.273 |
| Meta-epidemiology (narrow) | 0.002 | 0.002 |
| Meta-epidemiology (broad) | 0.007 | 0.016 |
| Bibliometrics | 0.024 | 0.017 |
| Science and technology studies | 0.002 | 0.002 |
| Scholarly communication | 0.007 | 0.006 |
| Open science | 0.003 | 0.005 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.007 | 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".