Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life
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
Abstract Research in the field of disability should include the voice of individuals with intellectual disabilities (ID), since these individuals are considered to be the experts on their own experiences. Quality of life (QoL) is a worldwide concept that has been studied in many areas, including ID. Since about the year 2000, researchers have studied QoL of families in many countries around the world, but this body of research has mostly reflected the views of the main caregiver of the person with ID. The major purpose of this study was to give voice to persons with ID, and to explore their perspectives about their FQoL. Four focus groups were conducted with 17 men and women with ID (mild and moderate), aged between 16 and 53 years old. Full transcriptions of the focus group discussions were analyzed with the NVivo 10 software. The findings showed that persons with ID identify family relationships as the most important dimension for FQoL and that some differences between younger and older participants existed. Ethical and practical challenges, as well as the implications for research and intervention are discussed. The inclusion of individuals with ID as informants in research is a way to value their point of view, empower them, and recognize the knowledge that they are able to bring to research.
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 | 0.005 | 0.664 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.000 | 0.003 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| 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 it