Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study
Bibliographic record
Abstract
Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1 year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference = 0.05, t(360) = 0.1, p = 0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population. Lay abstract Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.
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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 | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| 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 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".