Navigating Uncharted Territory: Experiences of Families when a Child is Dying
Bibliographic record
Abstract
In this grounded theory study, eight families moved through a process of navigating uncharted territory as they lived with their child who was dying from a neurodegenerative illness. The emotions of fear, uncertainty, and grief gave impetus to the process. Families lived much of their lives on plateaus of relative stability, where they often felt alone and isolated from health care professionals. Periods of instability led to families dropping off the plateau. Living with a dying child had profound physical, emotional, and financial effects on families. The process was characterized by four dimensions. Parents used strategies within these dimensions to manage the physical, cognitive, and emotional work arising from the situation. These dimensions and strategies were constrained and facilitated by four intervening conditions. In addition, the process occurred within the broader context of the acute, curative health care system and the sociocultural environment. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these 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 | 0.008 | 0.016 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.017 | 0.013 |
| Scholarly communication | 0.006 | 0.007 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.002 | 0.005 |
| 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".