The Forgotten Field: ‘Invisible’ Home Care Workers Seek Agency Support

Despite being on the front lines of care during the COVID-19 emergency, New York City caregivers often felt “invisible” and faced a higher risk of contracting the virus.

That’s according to a study published Tuesday by JAMA Internal Medicine. As part of the study, researchers interviewed 33 caregivers who were employed by 24 different home care agencies across New York City.

“The findings are alarming but not surprising to those who are familiar with the work of home care workers,” wrote Dr. Theresa A. Allison in a corresponding JAMA op-ed. Allison is a professor of medicine in the division of geriatrics at the University of California San Francisco.

In many ways, New York was ground zero for the public health emergency in the U.S.

The first cases of the virus in New York City were reported at the start of March. In the following months, the U.S. would have more than 1 million confirmed cases of COVID-19, with one-third of these cases coming from New York City, according to the study.

Caregivers have been positioned as essential workers during this crisis, with many continuing to provide daily care to patients with complex and chronic conditions — or to individuals actually battling the COVID-19 virus.

But while serving in their essential roles, many caregivers felt like the “forgotten field” in relation to the larger health care community.

“You hear people clapping, thanking doctors and nurses, even the hospital cleaning staff,” one of the surveyed in-home care workers said. “I’m not doing this because I want praise; I love what I do. But it would be nice for people to show us gratitude.”

The COVID-19 emergency also placed caregivers at higher risk for transmission, as workers took on errands such as grocery and pharmacy runs in an effort to protect their patients. Many caregivers relied on public transportation, which they felt further increased the risk of contracting the virus.

The JAMA study also highlighted other themes that emerged from interviews with New York City caregivers. One theme was the differing levels of support from their in-home care agencies in terms of receiving information about COVID-19, personal protective equipment (PPE) and training.

While some agencies were able to respond quickly, some caregivers reported they barely received communication about the public health emergency.

Additionally, some caregivers reported that they received insufficient masks, gloves and other PPE from their agencies, in turn leaving them vulnerable. Some caregivers noted they did not receive COVID-19 training from their agencies, though some agencies had them perform self-assessments to screen for symptoms. 

“Although lack of sufficient PPE has been widespread throughout the first few months of the pandemic in the United States, inadequate PPE in the home increases transmission risks for not only the home health worker and care recipient but also other household members and visitors,” Allison wrote.

Without agency resources, caregivers relied on other sources of support, according to the JAMA study. Specifically, caregivers who didn’t receive information about COVID-19 from their agencies turned to the news, social media, government briefings and their worker unions.

In some cases, caregivers bought their own PPE, or turned to family and friends for help.

The study does suggest that some agencies were quick in their COVID-19 responses.

Based on her observations as the president and CEO of the New York State Association of Health Care Providers, agencies used several methods to support workers, Kathy Febraio told Home Health Care News in an email.

“Communication with staff became a daily event through as many channels as possible: social media, texting, email, web postings, phone calls and good old-fashioned snail mail,” Febraio said. “Agencies kept their employees informed about infection control procedures, proper donning and doffing of personal protective equipment, policy updates, as well as information on child care resources, government updates, school closings and wellness resources.”

The New York State Association of Health Care Providers is a trade association that represents 350 offices of home care providers, home health providers and other health-related organizations.

The study reported that caregivers often found themselves navigating difficult choices. For instance, caregivers had to decide whether to care for COVID-19 patients and risk contracting the virus, placing themselves in a financially unstable position.

Generally, caregivers felt it was their duty to provide care during this time.

Overall, the findings of the study are instructive for providers and policymakers as they continue to work on remedies, Roger Noyes, director of communications at the Home Care Association of New York State (HCA-NYS), told HHCN in an email. 

“Many of the key themes in this study echo what our organization has identified in our own survey of the home care field,” Noyes said. “This includes the need for a more coordinated effort at all levels of emergency management to overcome personal protective equipment supply challenges.”

HCA-NYS is a state trade organization that represents nearly 400 home- and community-based care providers and organizations.

Noyes points out that many home care leaders participated in grassroots efforts to establish voluntary PPE distribution sites in all boroughs of New York City to coordinate with city officials and partner organizations on this area of need.

In her op-ed, Allison said she hoped the pandemic will lead to future home care reform moving forward.

“Just as COVID-19 has accelerated other aspects of medical and social progress, it is time to use the pandemic as an opportunity to engage in social justice for home care workers, recognizing the value of their work by investing in their health and financial security,” Allison wrote.