Individuals with chronic illnesses or disabilities, as well as those over the age of 65, occupy the highest risk categories for contracting and dying from COVID-19. This project focuses on these invisible frontlines of care: the millions of chronically ill and/or elderly Americans who are not institutionalized and are instead receiving care at home from family members, specifically their spouses. How is COVID-19 shaping the hidden, intimate worlds of spousal care at home? What are the immediate and the potential long-term consequences for these families? How are they coping and what supports do they need?

This project will use qualitative research methods to gather meaningful data to constructively inform responses from communities, public actors, and other institutions. Spousal caregivers will be recruited through the national Facebook group of the Well Spouse Association, a spousal caregiver support organization in the United States. Through virtual interviews with caregivers, the project will study what caregiving looked like before and during COVID-19; caregivers’ access to and utilization levels of home care supports (such as home health aides) and how access to such supports has been affected; and what strategies caregivers are using to adjust to the pandemic, including practices with regard to social isolation and managing fear of infection.

The project is designed to include a racially and economically diverse sample and will first identify themes in the data and then will show how they are distributed across sociodemographic categories. Themes that pinpoint where policy efforts should be targeted will be highlighted for public health and other experts.