Interviews with family members who cared for COVID-19 patients after hospital discharge reveal unique challenges.

Roughly 21% of hospitalized COVID-19 patients at the height of the pandemic required an intensive care stay and the bulk were cared for by family upon discharge. However, not much is known about how these caregivers and patients adapted.

To learn more, University of Michigan researchers surveyed COVID-19 ICU patients who were hospitalized in Southeastern Michigan between the start of the US pandemic and October 2020. Researchers interviewed 32 patients after discharge, along with 32 caregivers.

The data confirm previous research that, in general, the bulk of family caregiving falls to women, with 75% of the COVID-19 caregivers in the study identifying as female and 75% of patients identifying as male.

Six themes emerged and three were unique to COVID: managing infection, engaging support services, and patient independence.

“The desire to be independent is definitely something that we would likely see across many disabling illnesses,” says Sheria Robinson-Lane, assistant professor at the School of Nursing and the study’s first author. “However, the cognitive changes that can occur with a severe COVID-19 infection are perhaps more unexpected for families, not usually discussed, and can make caregiving… extra stressful.”

Managing infection was especially challenging before vaccines and other treatments because patients were so sick and COVID is highly transmissible, Robinson-Lane says. Caregivers, at risk of infection themselves, were forced to balance their self-care needs with potential risks to public health.

“We had to keep family and friends away… with the lungs still healing, we just couldn’t take that chance,” one caregiver said. “Even when I go into work, I’m isolated. I stay away from people.”

The most frequently used home care services were nursing support and occupational and physical therapy. One patient said: “Twice a week, I do leg exercises and stuff like that. After-hospital care was a great thing. You need it. You need it.”

Robinson-Lane says caregivers had to manage their own COVID-related illness, were not always allowed at bedsides, and had to deal with continued isolation after discharge.

Other themes included engaging family and friend support, managing emotions, and increased responsibilities due to caregiving.

Read the full article about family caregiving and COVID-19 by Laura Bailey at Futurity.