Home-Based Care Provider Perspectives on Care Refusal during the COVID-19 Pandemic

Acute and chronic disease management continues to shift toward a health care in the home model, yet literature discussing continuity of home-based care services during public health emergencies, such as infectious disease pandemics, is scant. In the current study, we used semi-structured telephone interviews with 27 home-based care providers (HBCPs) from Medicare-certified home health care agencies located in eight U.S. counties to explore older adults’ decision making around home-based care service continuation during the coronavirus disease 2019 (COVID-19) pandemic. Four themes emerged, including two related to older adults’ decision making around refusal of in-home care and two related to HBCPs’ responses to care refusals. Fear of COVID-19 infection motivated older adults to make care-related decisions that were incongruent with their health needs, including refusal of care in the home, despite receiving education from HBCPs. These data highlight a need for tools to help HBCPs better support patients through decision-making processes about care continuation during COVID-19 and future infectious disease pandemics.