The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey.
Margaret Waltz, Courtney Canter, Jeannette T Bensen and 10 others
PMID 36310386WHAT IT FOUND
Only two of 25 caregivers said the pandemic interrupted their child's diagnostic search.
But every caregiver needing in-person physical, occupational, speech, behavioral, or psychotherapy had trouble accessing it, and virtual therapy often left parents to do therapy without enough training.
Key findings
01Only two of 25 caregivers reported pandemic-related interruption to their child's diagnostic odyssey.
02All caregivers who needed in-person physical, occupational, speech, behavioral, or psychotherapy reported difficulty accessing those therapies.
03Caregivers who tried virtual therapy often said they lacked training and resources, and they struggled to engage their child during sessions.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The interview pool was limited to caregivers who had already completed all activities in the larger NCGENES 2 study. The study did not capture caregivers of children who had not yet been seen by pediatric specialists. Twenty-five caregivers were interviewed, so the findings describe these participants' reported experiences rather than a general population. The interviews were conducted between August and November 2020, during a changing phase of the pandemic.
The easy way to misread this
Do not conclude the pandemic did not affect children's care because only two caregivers reported diagnostic odyssey interruptions. The study found that every caregiver who needed in-person therapy had difficulty accessing it, and virtual therapy often created new burdens.