Each star represents the headquarters of a home care agency from which participants in the study were employed. Some agencies had more than 1 headquarters. JFK indicates John F. Kennedy.
eAppendix 1. Interview Topic Guide
eAppendix 2. Code Book
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Sterling MR, Tseng E, Poon A, et al. Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic: A Qualitative Analysis. JAMA Intern Med. 2020;180(11):1453–1459. doi:10.1001/jamainternmed.2020.3930
What are the experiences of home health care workers caring for older adults and for patients with chronic illnesses during the coronavirus disease 2019 (COVID-19) pandemic?
In this qualitative study of 33 home health care workers employed by 24 unique home care agencies across New York City, participants reported that they were at heightened risk for contracting and transmitting COVID-19. Despite providing integral care to vulnerable patients, home health care workers felt inadequately supported and generally invisible.
During the COVID-19 pandemic, home health care workers experienced challenges that increased their vulnerability as a workforce.
Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers.
To understand the experiences of home health care workers caring for patients in New York City during the COVID-19 pandemic.
Design, Setting, and Participants
From March to April 2020, a qualitative study with 1-to-1 semistructured interviews of 33 home health care workers in New York City was conducted in partnership with the 1199SEIU Home Care Industry Education Fund, a benefit fund of the 1199 Service Employees International Union United Healthcare Workers East, the largest health care union in the US. Purposeful sampling was used to identify and recruit home health care workers.
Main Outcomes and Measures
Audio-recorded interviews were professionally transcribed and analyzed using grounded theory. Major themes and subthemes were identified.
In total, 33 home health care workers employed by 24 unique home care agencies across the 5 boroughs of New York City participated. Participants had a mean (SD) age of 47.6 (14.0) years, 32 (97%) were women, 21 (64%) were Black participants, and 6 (18%) were Hispanic participants. Five major themes emerged: home health care workers (1) were on the front lines of the COVID-19 pandemic but felt invisible; (2) reported a heightened risk for virus transmission; (3) received varying amounts of information, supplies, and training from their home care agencies; (4) relied on nonagency alternatives for support, including information and supplies; and (5) were forced to make difficult trade-offs in their work and personal lives.
Conclusions and Relevance
In this qualitative analysis, home health care workers reported providing frontline essential care, often at personal risk, during the COVID-19 pandemic. They experienced challenges that exacerbated the inequities they face as a marginalized workforce. Interventions and policies to better support these frontline health care professionals are urgently needed.
The illness caused by the novel severe acute respiratory syndrome coronavirus 2 infection, coronavirus disease 2019 (COVID-19), was first reported in New York City (NYC) at the beginning of March.1 Two months later, the US surpassed 1 million diagnosed cases, with NYC reporting one-third of these cases and more than 20 000 deaths.2 Home health care workers, who are composed of home health and personal care aides and home attendants, care for community-dwelling adults and therefore play an important role in supporting those with confirmed and suspected COVID-19 who remain at home.3-5 Unlike other health professionals, whose interactions with patients are relatively brief, home health care workers spend hours to days with patients, assisting with activities of daily living (eg, bathing and dressing), instrumental activities of daily living (eg, preparing meals and cleaning), and medically oriented tasks (eg, vital signs and wound care). In addition, these workers frequently provide companionship and emotional support.6 The COVID-19 pandemic brings many potential challenges to this caregiving role given the risk of virus transmission to both patients and workers in the community.
Despite being integral to patient care, home health care workers—who are mostly middle-age women, people of color, and immigrants—are often an invisible and vulnerable workforce.5,7 They work long hours, earn minimum wages, and have limited opportunities for career advancement.8,9 Indeed, 1 of every 6 workers lives below the federal poverty line.5 These conditions have led to high turnover rates and workforce shortages.10,11 As the COVID-19 pandemic escalates and as home health care workers continue to care for elderly patients and for medically complex patients in the home, it is likely that this workforce will become increasingly more vulnerable, both physically and financially.
In this context, the present study aimed to understand the experiences of home health care workers caring for patients in NYC during the COVID-19 pandemic because, to date, the majority of studies and lay press articles have focused on the experiences of hospital-based health care professionals and employees. Specifically, we sought to elucidate the challenges home health care workers face regarding disease transmission, preparedness, and well-being, to inform future studies, interventions, and policies.
This qualitative study was conducted from March 26 to April 30, 2020, in partnership with a benefit fund of the 1199 Service Employees International Union (SEIU) United Healthcare Workers East, the 1199SEIU Home Care Industry Education Fund (hereafter called the Education Fund). The 1199SEIU is the largest health care union in the US, representing more than 400 000 workers in hospitals, nursing homes, clinics, and home care agencies.12 The Education Fund provides education and training benefits to 75 000 home health care workers employed by 55 home care services agencies in NYC.13 We used purposeful sampling to achieve a balanced sample of home health care workers with respect to their agency (range of sizes of certified and licensed home care agencies) and borough of employment in NYC.14 To be eligible, workers had to be currently employed by a home care agency in NYC and speak English. Using a standardized script, Education Fund staff members conducted general outreach via telephone calls among home health care workers who had in-person training courses at the Education Fund headquarters that needed to be rescheduled given the COVID-19 pandemic. During these calls, staff assessed workers for their interest and eligibility. The lead investigator (M.R.S.) then approached these individuals via email or telephone with a standardized script explaining the details of this voluntary study. To ensure even more perspectives, the lead investigator conducted written outreach to a few agencies (affiliated with the Education Fund) that represented additional geographic diversity and whose workers had not yet been included in the sample. This article adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline.15 The study was approved by the Cornell University institutional review board. Participants provided verbal informed consent—because interviews were not conducted in person for safety during the COVID-19 pandemic—including permission to record the interview and to publish deidentified excerpts from the interview. Informed consent was obtained in a manner consistent with the Common Rule requirement. Following the interview, participants received $25.00 gift cards.
Three researchers (M.R.S., E.T., and A.P.) trained in qualitative methods conducted 1-to-1 interviews using a semistructured topic guide and Zoom video conference software.16 The topic guide was informed by prior research conducted by members of our team,7,17,18 informal discussions with agency leaders at the beginning of the pandemic, and prior studies on home care workers’ preparedness during past epidemics.19-21 Interview questions broadly focused on (1) what workers knew about COVID-19; (2) how COVID-19 affected their work; and (3) the challenges they experienced during COVID-19 (eAppendix 1 in the Supplement). In addition, self-reported demographic characteristics data, including age, sex, race/ethnicity, educational level, and employment history, were collected.
Interviews were audio recorded and professionally transcribed. Data were analyzed using grounded theory.22,23 To ensure rigor of the method, a constant comparative approach was used at each stage. First, 3 investigators (E.T., A.P., and J.C.) independently reviewed and open coded 3 transcripts. Data were analyzed in Excel spreadsheets, and codes were analyzed using a custom-built and Python-based visualization tool.24 The preliminary coding schema totaled 91 codes. Two lead investigators (M.R.S. and N.D.) reviewed the first 3 transcripts and consolidated the preliminary codes into a final codebook of 66 unique codes (eAppendix 2 in the Supplement). The 3 investigators then recoded these 3 transcripts using the uniform codebook and subsequently applied it to remaining transcripts. The 3 coders met to revise the codebook every 2 transcripts, and the 2 lead investigators reviewed each version of the codebook. Saturation, that is, the point at which no new codes were added, was achieved at the 25th interview. We conducted 8 additional interviews beyond saturation because these participants were already scheduled and had rearranged their work schedules to participate.
Once coding of all interviews was completed, the 5-person team (M.R.S., E.T., A.P., J.C., and N.D.) consolidated the codes into 19 categories by consensus.25 The team then iteratively consolidated these categories into unifying themes, reconciling discrepancies by discussion.26 Themes were further refined by team members (A.C.A., L.M.K., and C.K.A.) who had not conducted or coded interviews but who had content expertise.
In total, 33 home health care workers employed by 24 unique home care agencies across 5 boroughs of NYC participated (Table). Participant mean (SD) age was 47.6 (14.0) years, 32 (97%) were women, 21 (64%) were Black participants, 6 (18%) were Hispanic participants, and 22 (67%) completed some college or more education. Overall, participants had a mean (SD) of 10.9 (7.0) years of experience as home health care workers. Of 33 participants, 4 (12%) reported that they had become ill with suspected or confirmed COVID-19 during the study period and that they had stopped working once they experienced symptoms. The Figure shows the geographic distribution of the 24 agencies that employed the participants. Interview duration ranged from 25 to 40 minutes. The analysis resulted in 5 major themes with subthemes (Box). We present them alongside representative quotations.
Providing day-to-day care for patients with chronic conditions
Monitoring patients for COVID-19 symptoms
Taking precautions to prevent COVID-19 in the home
Risk of transmitting COVID-19 to patients
Risk of contracting COVID-19 themselves
Reliance on public transportation, which increases exposure risk
Numerous home care workers per patient, increases risk of spread
Differing amounts of COVID-19 information
Limited personal protective equipment
Lacking COVID-19–specific training
Information sources included news media, social media, and others
Nonagency sources of personal protective equipment
Working vs risk of exposure
Working vs risk of losing wages and benefits
Risk of transmission vs duty to provide care
Participants reported that they were considered essential workers in NYC. As such, they continued to work and care for their patients despite social distancing policies that would otherwise require keeping people 6 feet apart. Participants reported that the majority of their patients had several chronic conditions, which rendered patients high risk for COVID-19. In addition to their normal caregiving tasks, the participants also monitored patients for COVID-19 symptoms. This process presented new challenges because symptoms, such as cough and shortness of breath, often mimicked patients’ usual symptoms. When concern for the potential of COVID-19 arose, participants acted; some participants called their agency, whereas others called the patients’ physicians and some called 911.
“I will ask them how long they had the cough. . . . I know even with a cough, you can’t go to an ER [emergency room]. . . . So I will call the doctor, who will give us information. Then I will try to do that for the patient and myself.”
Beyond monitoring their patients’ physical symptoms, participants also tried to assist with their patients’ emotional health. Many reported that this endeavor was worsened by patients watching the news.
“It’s become a very stressful environment. She watches the news constantly. . . . As soon as I set foot in the door—‘did you see this, did you see that, about coronavirus?’”
In addition, participants went to great lengths to take COVID-19 precautions while in patients’ homes. They described engaging in elaborate cleaning routines whenever possible during their shifts.
“I clean like there’s no tomorrow. I wipe down every surface—the table—the chair. I walk with the little bleach wipes.”
However, despite these efforts to keep their patients healthy and safe, many described feeling invisible to the health care community and society.
“We’re definitely a forgotten field. . . . You hear people clapping, thanking doctors and nurses, even the hospital cleaning staff. . . . 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.”
Participants explained that providing care to patients placed them in a unique position with respect to COVID-19 transmission. They worried about their patients becoming ill in general and about transmitting the virus to them.
“I feel guilty because since they're not going outside, I know if they catch it, it’s because of me. That’s my fear going to work.”
To protect patients, participants went to the grocery store and pharmacy on their behalf, which increased their own risk for contracting COVID-19. Although sometimes they volunteered, other times they were asked.
“He 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.”
Participants also worried about their own risk of contracting COVID-19, and nearly all felt that their dependence on public transportation increased this risk. Many participants reported using public transportation to get to their patients’ homes, to run errands for them, and to travel to their agency for supplies.
“I take 3 buses to get to work: the 9, the 19, and the 5. . . . That's a lot of traveling and different people around.”
Finally, many participants cared for a patient alongside other workers who entered and left the home each day. This added to their fear of transmitting COVID-19 to their patients and to one another.
“There are 5 of us that work with her. . . . What happens if we all get sick?”
Owing to this concern, some participants tried to coordinate hygiene and handoff practices with the other aides caring for common patients.
Participants described receiving varying levels of support from their agencies, specifically regarding receiving information about COVID-19, the availability of personal protective equipment (PPE), and receiving COVID-19 training. Although some agencies adapted quickly to the pandemic by providing workers with COVID-19–related information on a weekly or daily basis, others reportedly barely communicated about the pandemic.
“Nobody ever told us, ‘you gotta take precautions’ and blah blah; nobody tell us anything.”
Many home health care workers also reported that they lacked adequate PPE from their agencies, including masks and gloves, which they felt was essential for care.
“I’m worried about getting infected because I don’t have the right equipment. The agency has not really been providing for their workers, at all.”
Participants reported that they had not received COVID-19–specific training from their agencies but had hoped that it would be offered in the future. Some agencies asked participants to perform daily “self-assessments.” Self-assessments, which were usually automated by phone, were intended to screen home health care workers for COVID-19 symptoms. Depending on how they answered, workers would be encouraged to go to work or to call their doctor.
“They text a 4-question screener every day. They want to know if something changes in your body. Do you have a fever? Do you have a cough?”
Owing to varying levels of institutional support, participants often relied on others for information and help. For example, if their agency did not provide information on COVID-19, participants turned to the news media, social media, government briefings, and their worker union.
“I watch the television, the news. I listen. I read on my phone, like on Facebook. I try to read about it everywhere.”
Although some agencies did provide PPE, many participants felt that the amount supplied was insufficient to meet their daily patient care needs. In response, some participants purchased their own supplies or turned to family members and friends.
“I don’t think we should have to go out and buy masks. I spent $20.00 to get a box of masks. . . . I walk all over just to buy a small can of Lysol for $7.00.”
Some participants also relied on other home health care workers for advice and support or turned to religion.
“We talk to each other. We need to protect ourselves for the clients, if you want to keep working.”
Owing to these challenges, participants described constantly navigating hard choices. For example, when patients contracted COVID-19, workers had to decide whether to continue caring for them, which meant potentially exposing themselves. Sometimes, however, patients fearful of contracting COVID-19 declined home care services, leaving workers to decide whether they should accept a new patient who they did not know. Workers also weighed whether they should remove themselves from cases they perceived to be risky. Taken together, they tried balancing the risks of work with their own health and financial well-being.
“You have to contribute certain hours to get benefits. . . . I have to go out there because I have bills to pay.”
“It’s just not a job where you can work from home.”
In addition, many spoke about balancing the risks of caring for patients during the COVID-19 pandemic with the duty or “calling” they felt to help patients.
“I see a fire. Am I going to walk right into that fire? . . . If I have the backup, the proper gear, yes, I’m going to be there on the front lines to help that person.”
To our knowledge, this is the first study to describe home health care workers’ experiences caring for older adults and for persons with chronic health conditions in the home during the COVID-19 pandemic. Our findings suggest that, although these study participants acted as essential health care professionals, they often felt poorly supported and generally invisible. Not only were they caring for a vulnerable patient population, but, owing to shortages in PPE and a heavy reliance on public transportation, they were at high risk for contracting COVID-19 and for transmitting it to their patients, other workers, and their own families. However, many could not afford to stop working, and others continued working out of a sense of duty. Taken together, caring for patients during the COVID-19 pandemic exacerbated this workforce’s existing vulnerabilities and professional challenges.
Another key finding was that, across all 5 themes, home health care workers expressed feelings of anxiousness stemming from numerous stressors. As health care professionals, they feared what the virus could do to their patients and to themselves. As marginalized workers, however, they also feared the economic toll the virus might have on their ability to maintain their pay and benefits. Prior studies have found that, even before the COVID-19 pandemic, home health care workers endured high levels of stress and job insecurity.27,28 The additional strain placed on workers by the pandemic, coupled with their already tenuous standing as minimum wage workers, exacerbated this stress. Our findings suggest that additional efforts to support workers’ mental and physical well-being during the pandemic are needed. Encouragingly, the 1199SEIU is now offering well-being and resiliency training for this workforce.29
Some of the trade-offs that home health care workers have navigated during the COVID-19 pandemic are similar to those faced by other health care professionals, but other challenges are unique and warrant separate attention from government officials and policy makers. First, although hospitals initially experienced PPE shortages,30,31 supplies in many regions of the United States have generally improved. Agencies, on the other hand, remain understocked. Indeed, a survey conducted by the Home Care Association of New York found that 67% of home care and hospice agencies in NY do not have sufficient PPE.32 Given that the number of cases is expected to rise, legislation that makes PPE available to home care agencies is critical. Second, the financial hardships that workers have endured point to the need for them to be considered “essential workers” across the US, a designation that they already have in NY. Without such designation, workers cannot receive benefits, such as paid sick leave and childcare, during the pandemic.33 Third, whereas hospitals have communicated COVID-19 information to clinicians and staff regularly, such information provided to home health workers has varied by agency, which may reflect uncertainty with respect to guidelines in the long-term care sector. To address this situation, unions and some agencies have recently added COVID-19 information to websites and (virtual) town halls.13 Our findings suggest that an approach integrating this information alongside COVID-19–specific training needs to be systematically implemented. Fourth, policies at the agency level that geographically organize cases to minimize public transportation use are important to protect home health workers and patients from community spread.
The strengths of our study include our community-partnered approach to recruit a diverse sample of participants employed by 24 unique home care agencies across NYC. In addition, we analyzed the data using a rigorous, grounded theory approach. We also note limitations. Because this is a qualitative study, the findings are not generalizable but rather convey experiences of participants that may not be captured in quantitative investigations. In addition, owing to our sample’s composition, our findings may not reflect the experiences of nonunionized or privately hired workers, non-English speakers, and those in suburban or rural areas. Finally, this study does not include the perspectives of the home care agency leadership or other stakeholders in home care; future research should elicit these perspectives.
Home health care workers have been on the front lines, working to ensure the health of older adults and those with chronic conditions or disabilities during the COVID-19 pandemic. In doing so, these workers are at considerable risk for contracting COVID-19 themselves. The risk of contracting COVID-19 has been exacerbated by inconsistent delivery of information on what home care workers should do to protect themselves and their clients, inadequate PPE, and a heavy reliance on public transportation. Already a vulnerable workforce, home health care workers face additional risks to their physical, mental, and financial well-being during the COVID-19 pandemic. Interventions and policies are urgently needed to protect this workforce and the vital role that they play.
Accepted for Publication: June 25, 2020.
Corresponding Author: Madeline R. Sterling, MD, MPH, MS, Division of General Internal Medicine, Department of Medicine, Weill Cornell Medicine, 420 E 70th St, LH-357, New York, NY 10021 (firstname.lastname@example.org).
Published Online: August 4, 2020. doi:10.1001/jamainternmed.2020.3930
Author Contributions: Drs Sterling and Dell had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Sterling, Tseng, Avgar, Ankuda, Dell.
Acquisition, analysis, or interpretation of data: Sterling, Tseng, Poon, Cho, Kern, Dell.
Drafting of the manuscript: Sterling, Tseng, Cho.
Critical revision of the manuscript for important intellectual content: Sterling, Tseng, Poon, Avgar, Kern, Ankuda, Dell.
Statistical analysis: Sterling, Tseng, Dell.
Obtained funding: Sterling, Dell.
Administrative, technical, or material support: Sterling, Tseng, Poon, Cho, Ankuda, Dell.
Supervision: Sterling, Kern, Dell.
Conflict of Interest Disclosures: Dr Sterling reported receiving grants from the Robert Wood Johnson Foundation and from the National Heart, Lung, and Blood Institute (NHLBI) during the conduct of the study. Ms Tseng, Mr Poon, and Dr Dell reported receiving grants from the Robert Wood Johnson Foundation during the conduct of the study. Dr Kern reported receiving grant funding from the NHLBI outside the submitted work and receiving personal fees from Mathematica and from Mass General Brigham (formerly Partners Healthcare) outside the submitted work. Dr Ankuda reported receiving grants from the National Palliative Care Research Center outside the submitted work. No other disclosures were reported.
Funding/Support: This study was supported, in part, by the Robert Wood Johnson Foundation (grant 76487). Dr Sterling is supported by the NHLBI (award K23HL150160).
Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Disclaimer: The views expressed here do not reflect those of the Robert Wood Johnson Foundation or the NHLBI.
Meeting Presentation: This paper was presented at the University of North Carolina’s Center for Health Equity Webinar Series; April 22, 2020; Chapel Hill, North Carolina.
Additional Contributions: We thank Ann Lee, BS, and Yanira Escamilla, LCSW, from the 1199SEIU Home Care Industry Education Fund for their assistance with recruitment. Ms Lee was compensated for her contributions to this study.
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