Perceptions of quality of life in people with ALS: Effects of coping and health care
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
Few qualitative studies have explored the 'meaning' of life experiences for persons with ALS. We aimed to identify the meaning of QoL in five selected individuals, and to consider how their experience of health care affected perceived well-being, using a phenomenological approach. Four of the five participants were revisited. Themes that emerged included: importance of faith, search for control, importance of dignity, desire to maintain identity, importance of family, a sense of loss, importance of altruism and support, fighting amyotrophic lateral sclerosis, and appreciation of life. All participants felt that professional services contributed to their well-being. QoL remained individual and multi-dimensional and was defined by cognitive and behavioural strategies used to cope with ALS. Our findings highlight the need to consider how persons with ALS may adapt to progressive illness.
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 | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| 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) | 0.000 | 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