Parents with intellectual disability reporting on factors affecting their caregiving in the wake of the COVID-19 pandemic: A qualitative study.
Tommie Forslund, Stina Fernqvist, Helena Tegler
PMID 36207144WHAT IT FOUND
Parents with intellectual disability reported that the pandemic overwhelmed their caregiving capacity.
They struggled to understand abstract health information and lost access to home-based professional support. This led to increased isolation, strained parent-child relationships, and in one case, the placement of children in out-of-home care.
Key findings
01All parents experienced increased caregiving demands, and most reported reduced coping resources, leading to strained parent-child interactions.
02Parents universally struggled to understand governmental pandemic information, which contributed to anxiety, sleep problems, and family isolation.
03The pause of home-based professional support left parents alone with household tasks and bills, causing some to feel depressed and overwhelmed.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
Small sample size (10 parents) limits generalisability. No parents with infants or young preschoolers were included. All participants lived in Sweden, an affluent welfare state with strong social support systems, so findings may not apply to more marginalised contexts. The digital divide and fear of infection may have excluded parents who were most vulnerable. Results are self-reported and may be influenced by memory bias.
Declared interests
The authors declare no conflicts of interest. The study was funded by Nära vård och hälsa – Region Uppsala (Grant APCF-942035).
The easy way to misread this
Do not interpret these findings as evidence that digital or phone-based support is generally ineffective for parents with intellectual disability. The study highlights that for this specific group, the loss of familiar, in-home professional support was particularly damaging, and digital alternatives were often insufficient due to communication barriers. However, the small sample and specific Swedish context mean these results should not be generalised to all parents with intellectual disability without caution.