‘Only parents can understand the problems and needs of children with thalassaemia’: parental activism for thalassaemia care in Northern India
Bibliographic record
Abstract
Evolving knowledge of genetics and improved clinical care have re-shaped life choices for those suffering from chronic, incurable conditions and their families. Yet the realisation of care requires complex navigation to access vital therapies which is often difficult for individuals or their family carers. In the article, we explore the struggles and strategies of parents of children with thalassemia (a genetically inherited blood disorder) in a North Indian city, who have come together to ensure better long-term health of their children. A focus on the ways in which families come together and remain apart in their quest for guaranteed access to life-saving substances such as filtered blood, provides insight into the diversity of bio-social strategies at work. It is not only family relationships and kinship, we suggest, but bio-sociality itself which is reshaped with the advent of new rights-based languages, evolving therapies and state support which hold out new possibilities for young people with thalassemia to live as normal a life-course as possible.
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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 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.011 | 0.007 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.005 |
| 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".