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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.
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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 (email@example.com).
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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