Fragmented care and whole-person illness: Decision-making for people with chronic end-stage kidney disease
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
PURPOSE: The study reported herein sought to better understand how patients with multi-morbid, chronic illness-who receive care in institutions designed for treatment of acute illness-experience and engage in health-related decisions. METHODS: In an urban Canadian teaching hospital, we studied the interactions of six hemodialysis patients and 11 of the health professionals involved in their care. For 1 year (September 2009 to September 2010), we conducted ethnographic observation and interviews of six cases each comprising one hemodialysis patient and various health professionals including medical specialists, nurses, a social worker, and a dietician. RESULTS: We found that the ubiquity and complexity of health-related decision-making in the lives of these patients suggests the need for a more holistic interpretation of health-related decision-making. DISCUSSION: We propose an interpretation of decision-making as an ongoing process of integrating illness and life; as frequently open-ended, cumulative, and relational; and as fundamentally shaped by the fragmented delivery of care for patients with multiple morbidities. CONCLUSION: Our understanding of decision-making suggests that people living with complex chronic illness need to receive care from institutions that recognize and address their multi-morbidity as a whole illness that is constantly being integrated into the life of a whole person.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 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) | 0.001 | 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 it