Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States.
Divya Joshi, Nayo Hill, Alexandra Hruby and 4 others
PMID 33713698WHAT IT FOUND
People with cerebral palsy and their caregivers are willing to join research sooner than they are to socialize, but parents wait longer than adults do for studies offering no direct benefit.
Those with higher physical needs were the most cautious about returning to in-person research.
Key findings
01Respondents were willing to participate in research with potential direct benefit sooner than they were willing to engage in social or recreational activities.
02Parents of children with cerebral palsy were less comfortable with their children participating in research with no direct benefit compared to adults with cerebral palsy answering for themselves.
03Individuals or caregivers of children with higher physical dependence (GMFCS Levels IV and V) were the least willing to participate in research at earlier time points.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The sample was geographically skewed, with over half of the respondents residing in Illinois, which may not reflect national attitudes. The survey relied on self-reported hypothetical comfort levels rather than actual behavioral data on research attendance. There was a slight underrepresentation of minority groups and no data collected on socioeconomic status, which are factors linked to health access and risk perception.
Declared interests
No specific conflicts of interest were declared in the provided text, though the study was supported by NIH grants.
The easy way to misread this
Do not assume that public COVID-19 incidence rates in a patient's area accurately predict their willingness to attend therapy research. The study found that local case rates did not significantly affect participation timing, whereas the patient's physical function level and whether they were a parent or adult did.