It’s a burden but… having a sibling with Prader Willi syndrome: stress, growth, and perceived burden
Bibliographic record
Abstract
Prader Willi Syndrome (PWS) is a rare genetic disorder affecting approximately 1 in 15000 live births worldwide that presents a spectrum of physiological and neurological-related health challenges. PWS has been extensively studied as it affects parents, however, research on sibling interaction is limited. This study examined to what extent neurotypical siblings with a brother or sister with PWS experience stress in daily life, is there a feeling of growth as a result, and are feelings of burden higher when compared to the general population. Using the Perceived Stress Scale 10, the Post Traumatic Growth Inventory, and the Zarit Burden Interview questionnaires, a comparison between families with a neurotypical -PWS sibling dynamic and non-PWS – sibling dynamic was conducted. The findings between the control and experimental groups indicated similar stress levels, and both groups indicated a moderately high level of stress. No statistically significant difference in personal growth was present. The perception of burden was significantly higher for the neurotypical-PWS group versus the control group. The details of the results indicated that the relationship dynamic between PWS-neurotypical siblings requires further research, and the use of different survey tools may be warranted to better explore this population.
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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 | 0.000 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.003 | 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".