Facilitating Respite, Communication, and Care for Children With Intellectual and Developmental Disabilities: Preliminary Evaluation of the Caregiver Pain Information Guide
Bibliographic record
Abstract
Background: Pain is common in children with intellectual and developmental disabilities (I/DD) and yet is an understudied issue. Respite workers commonly care for children with I/DD but are lacking in resources to assist in pain assessment and management for this population. Without adequate knowledge in this domain, children with I/DD are at risk of their pain being underrecognized and undermanaged. A resource for caregivers was developed to address this issue, facilitating communication between parents and respite workers and better addressing the complex pain-related needs of children with I/DD. The objective of this study was to solicit initial feedback on the content, feasibility, and usability of the resource. Method/Procedure: Semistructured individual interviews and questionnaires were completed with 7 parents of children with I/DD and 6 respite workers. Results: All participants viewed the resource as important and potentially useful. Content analyses indicated that participants appreciated the comprehensiveness and format of the resource, whereas the modifiability was identified as an area for improvement. Participants believed that the resource would be useful across settings with a variety of caregivers. Three categories of considerations were identified as potential facilitators and barriers for implementation: consideration of how the resource is being completed, who is completing it, and organization-based procedures. Discussion/Conclusions: Results from this study suggest that the Caregiver Pain Information Guide is a promising resource for helping respite workers better understand pain in children with I/DD. Future work is needed on implementation and impact of this resource in community settings. Implications for Impact Statement Children with intellectual and developmental disabilities experience pain frequently and are at risk of having their pain missed by caregivers. Parents would like to share pain-related knowledge and skills specific to their children with intellectual and developmental disabilities with those who support their child in other settings. The Caregiver Pain Information Guide was created to facilitate communication between parents and caregivers of these children. The current article discusses initial feedback from parents and respite workers regarding this new tool.
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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 | 0.012 | 0.020 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.002 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 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".