Home Healthcare Workers Feel Forgotten During COVID-19, Study Shows

Home healthcare workers are feeling unsupported and underprepared during the COVID-19 pandemic. According to an original investigation published in JAMA Internal Medicine, they're also feeling invisible.

The JAMA investigation, published earlier this month, involved 33 home healthcare workers in New York City employed by 24 different agencies. While they were tasked with providing essential services to older adults and people with disabilities throughout the pandemic, they reported having to rely on non-agency alternatives for support, information, and personal protective equipment (PPE). They also reported their jobs put them at a higher risk for both contracting COVID-19 and transmitting it to others. Still, they said they don't experience the same recognition as other frontline workers, like doctors.

Home healthcare workers outside of New York City are feeling the same way.

"Throughout this entire pandemic, our industry has felt forgotten," Leigh Mobley, co-owner of Brett’s Guiding Light, a home care agency in Georgia, tells Verywell. "Because we aren’t doctors or registered nurses, we've been overlooked for needing adequate protection from this virus. Everyone was donating all they had to hospitals and nursing homes."

Home healthcare workers include personal care aides and home attendants who play an essential role in supporting homebound or home-dwelling patients. They are typically middle-age women, racial minorities, and low wage earners.

Survey Results

The researchers found five main themes among the New York City home healthcare workers who participated in one-on-one interviews in March and April:

1. They felt like they were on the frontlines of the pandemic, yet felt invisible. 
2. They felt a heightened risk of transmitting COVID-19 to patients and contracting it themselves.
3. They received varying amounts of information, supplies, and training from their agencies and often lacked adequate personal protective equipment.
4. They purchased their own PPE and cleaning supplies.
5. They felt forced to make trade-offs between their jobs and their personal lives for fear of losing their employment status or benefits.

On average, study participants were 48 years old with 11 years of home healthcare experience. All but one were women. Two-thirds of the participant were Black, and 18% were Hispanic.

Home Healthcare Workers Seem to Fear Spreading COVID-10 More Than Contracting It

Home healthcare workers assist in essential activities of daily living (ADLs) that make social distancing impossible, such as: 

• Bathing
• Grooming
• Transferring (getting in and out of a bed, chair, or wheelchair)
• Dressing
• Feeding
• Toileting

Because they're so closely interacting with patients, and are often the only ones doing so, the caregivers in the study expressed concerns about unknowingly transmitting COVID-19.

“I feel guilty because since [my patient is] not going outside, I know if they catch it, it’s because of me," one study respondent said. "That’s my fear going to work."

Mobley says her staff has similar concerns.

"All of our caregivers understand that our clients are no threat to us because most aren’t able to leave their homes. We are a threat to them," she says. "So for us to provide adequate care for them, we must use extreme precaution in our everyday lives."

Even if they did transmit COVID-19 to a patient, the home healthcare workers said it might be difficult to tell. Many homebound patients are living with multiple chronic conditions that share symptoms with COVID-19, like cough and shortness of breath.

To protect patients, home healthcare workers reported running errands on their behalf, increasing their own potential exposure to the virus. Nearly all of the participants used public transportation to commute.

"[My patient] needs to stay inside the house, so he tells me, ‘I need you to go there, go here.’ I really don’t want to, but I can’t say no. I’m the aide; I’m supposed to do this," another study respondent said.

Making Difficult Decisions

The New York City home healthcare workers relayed some of the tougher choices they've had to make, like whether or not to continue caring for a patient who tested positive for COVID-19. Others had to weigh the risks of taking on new patients for more income.

To help the staff of Brett's Guiding Light navigate these choices, Leigh says the agency offered two options.

"As soon as [the government] closed schools, we gave our caregivers the option to quarantine and continue working or go on unemployment," she says. "Every single one of them wanted to continue working."

This choice matches the findings of the JAMA investigation: home healthcare workers discussed feeling a sense of duty to help patients during COVID-19.

A Call For More Support

While most of the New York City home healthcare workers said they lacked adequate PPE from their agencies, like masks and gloves, agencies say it was near impossible for them to procure these supplies earlier in the pandemic.

"We couldn’t get help because our caregivers aren’t nurses. We were told we had to wait for PPE," Jess Barron, who co-owns Brett's Guiding Light with Mobley, says.

Eventually, their agency resorted to other means to secure the appropriate PPE for their staff, such as posting a Facebook plea for help and purchasing homemade masks for caregivers.

"Our caregivers are people that are in the patient’s home. They are there when doctors or nurses can’t be," Mobley says. "We are the ones giving baths, feeding, and caring for your loved one. We have more personal interaction with our patients than any other level of the medical field. We deserve protection."

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