On the ethics of engagement: health-related quality of life in terminally ill children and adolescents
Bibliographic record
Abstract
Background— Pediatric cancer remains the leading cause of disease-related death in children and adolescents. Promoting excellence in the care of terminally ill children is socially dependent on recognizing the complex dimensions of death, dying and living that emerge from situating the child as an active social and moral agent in their healthcare. The continued underrepresentation of children’s voices at the end of life, however, fails to ground modalities of care in the unique and evolving realities they face as palliative patients. Qualitative health research with terminally ill children has been proposed as a meaningful vehicle for engagement, to investigate the various dimensions of health-related quality of life and to augment their participatory agency in end of life care.Objective—To explore the ethics of qualitative engagement in assessing health-related quality of life (HRQoL) among children and adolescents with cancer, and to identify areas where there is paucity of effective qualitative methods for such engagement in pediatric palliative care research.Methods—This analysis was conducted as a critical assessment—combining policy and literature mapping from developmental child psychology, childhood sociology, jurisdictional codes of ethics for pediatric research and pediatric palliative care research—based on the framework for scoping review by Arksey and O’Malley (2005). Conclusion—Qualitative HRQoL research with terminally ill children demands innovative methods that afford greater legitimacy to children’s moral and social agency in palliative care settings. Because ensuring an optimal health-related quality of life (HRQoL) is the panacea of pediatric palliative care, it is an ethical imperative that care practices become the province of childhood expertise and social epistemologies of terminal illness. What emerges from the critical assessment is that such methods are poised to respect children’s participatory rights pursuant to the new sociology of the child and prevailing ethical norms governing pediatric research. Qualitative engagement in pediatric palliative care is both ethically defensible and a necessary element to delivering comprehensive patient care.
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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 | 0.072 | 0.074 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.009 | 0.041 |
| Scholarly communication | 0.010 | 0.009 |
| Open science | 0.002 | 0.014 |
| Research integrity | 0.004 | 0.008 |
| 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".