"You want them to be partners in therapy, but that's tricky when they're not there": A qualitative study exploring caregiver involvement across the continuum of care during the early COVID pandemic.
Marina B Wasilewski, Zara Szigeti, Christine L Sheppard and 6 others
PMID 37518867WHAT IT FOUND
Caregivers excluded from hospitals during acute COVID care felt unprepared when their loved ones came home.
They lacked practical training on daily tasks and safety, while community services were scarce. This sudden shift from distant phone contact to full-time home care caused significant distress and burden.
Key findings
01Strict visitor restrictions in acute care prevented caregivers from being physically present, limiting their involvement to phone or video communication and hindering their ability to learn care tasks.
02Discharge planning was often virtual and focused on equipment needs rather than practical caregiving skills, leaving caregivers unprepared for the level of dependency and tasks required at home.
03Lack of community-based services and disjointed information about equipment needs forced caregivers to assume extended roles, including personal care, often without adequate support or training.
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
Participants were English-speaking and had mid-to-high socioeconomic status, which limits the transferability of findings to diverse linguistic and economic groups. The study only included individuals who actually took on caregiving roles, excluding the experiences of those who chose not to or were unable to care for their loved ones. Data were collected during the early phase of the pandemic (March 2020 to February 2021), so findings may not reflect current practices as visitor policies and community services have evolved. The study was conducted in a single hospital network in Toronto, which may limit the generalizability of the findings to other healthcare systems or regions.
Declared interests
The authors declared no potential conflicts of interest. The study was supported by the Sunnybrook Research Institute COVID-19 Research Initiative and the Sunnybrook Foundation 407 ETR COVID-19 Research Fund.
The easy way to misread this
Do not assume that caregivers are prepared to manage patient needs at home simply because they were involved in phone calls or virtual meetings. The study shows that physical exclusion from the hospital prevented caregivers from learning practical care skills, leading to significant distress and unpreparedness upon discharge.