THE MORAL EXPERIENCE OF FAMILIES WITH CHILDREN REQUIRING ASSISTED-VENTILATION AT HOME
Bibliographic record
Abstract
The shift toward providing technologically complex care at home implies an assumption that “being home is good” – that this is the most desirable option. The aim of this study was to conduct an empirical analysis of the moral experience of families with children requiring assisted home ventilation. Twelve families (39 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Family moral experiences were investigated using a semi-structured interview and fieldwork observations. Six principal thematic categories were identified in the empirical data. (1) Confronting Parental Responsibility – Struggling to be a “good” parent: efforts necessary for families to balance one child's life-sustaining needs with everyday family needs. (2) Seeking Normality: striving to reconstruct family life into as normal a reality as possible. (3) Conflicting Social Values: a sense of devaluation of life with disability. (4) Living in Isolation: experience of marginalization resulting from conflicting social values. (5) What about the Voice of the Child? (the disclosures and silences of patients and their siblings); (6) Questioning the Moral Order: seeking to find sense in life. An overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment, highlighting that these children were not simply family burdens but also important sources of pleasure. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings.
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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 | 0.002 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.006 | 0.005 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| 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".