<i>“Unable to Feed My Hungry Child”</i> : Experiences of Mothers Caring for Children With Prader-Willi Syndrome
Bibliographic record
Abstract
Mothers' experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to 12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' everyday experiences amplified complex care needs for families and gaps in health and social care systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b) reconceptualizing care work, and (c) alternative care models.
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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 | 0.005 | 0.010 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.012 | 0.009 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.004 |
| 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".