Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
Olivia J Lindly, Amy M Shui, Noa M Stotts and 1 others
PMID 34657479WHAT IT FOUND
Caregiver strain did not significantly decrease on average over two years, despite the authors' hypothesis.
However, strain fluctuated for most families: it increased for nearly half and decreased for nearly half. Strain was lower when children's adaptive skills improved or behavior problems decreased.
Key findings
01Mean global caregiver strain did not significantly change between the two assessment points, contrary to the hypothesis that it would decrease.
02Individual caregiver strain scores fluctuated significantly, with strain increasing in 47.9% of parents and decreasing in 45.7% of parents.
03Improvements in child adaptive functioning and reductions in externalizing problem behaviors were associated with decreased caregiver strain.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study relied on a registry sample that was predominantly white, non-Hispanic, and highly educated, limiting generalizability to diverse or lower-resource populations. Attrition bias was present: families who dropped out were more likely to be of color, have lower education, or report higher child behavior problems, meaning the remaining sample may over-represent improved outcomes. The study could not determine if specific interventions (like parent training) caused the changes in strain, as intervention data was not collected. Caregiver strain was measured using a tool designed for general emotional/behavioral disorders, not specifically for autism, which may affect sensitivity.
Declared interests
The study was supported by Autism Speaks and the Health Resources and Services Administration. The authors noted no other conflicts of interest.
The easy way to misread this
Do not assume that caregiver strain naturally resolves over time. The study found no significant decrease on average, and nearly half of the parents experienced an increase in strain. The stability in the mean score hides the fact that individual experiences vary widely.