Aging out of Children's Hospitals - Exploring the Transition Out of Pediatric Care for Youth with Rare Medical Conditions and their Social Support Networks
Bibliographic record
Abstract
This is an anthropological investigation of social support networks for Persons Living with a Rare Disease, their experiences within children’s hospitals and health systems, as well as their transitions from pediatric to adult health systems in Canada. Drawing on the virtual semi-structured interviews with PLWRD and their social support network, this thesis investigates: 1) who participates in the social support network, 2) the roles social support networks play in the transition to adult care, 3) what new social support networks form during and after the transition, 4) the supports and challenges. This research will be a unique contribution to disability scholarship and anthropology by highlighting the voices of my participants of their shared lived experiences of transitioning out of pediatric care, the unique challenges they face, the importance of having a strong social support network, and raising awareness for the overlooked population or rare diseases.
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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 | 0.003 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.013 | 0.009 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.001 | 0.008 |
| Research integrity | 0.001 | 0.003 |
| 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".