Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic

Abstract

IMPORTANCE Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 ) 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.OBJECTIVE To understand the experiences of home health care workers caring for patients in New York City during the COVID-19 pandemic. DESIGN, SETTING, AND PARTICIPANTSFrom 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. RESULTSIn 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 RELEVANCEIn 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.

Impacts of the COVID-19 Pandemic on Home Health and Home Care Agency Managers, Clients, and Aides: A Cross-Sectional Survey, March to June, 2020

“…Additionally, aides are vulnerable to community SARS-CoV-2 exposure due to their experience of social and economic inequities that present infection risks, such as housing where distancing is impossible. 2,4 The findings in this survey are consistent with several recent studies. 4,12,13 A case series study also documented COVID-19 illness among clients in home care.…”

“…Despite the COVID-19 patient care provided by HH&HC agencies, early pandemic healthcare guidance, PPE, and educational and training resources were focused mainly on hospitals and nursing homes. [2][3][4] As a result, HH&HC managers spent time adapting guidance issued for facility-based healthcare to home-based care settings. For example, because aides' work remotely in private homes, procedures for storing/donning/doffing/disposing PPE differ from hospitals.…”

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“…The 1 study interviewed 33 home care home health and personal care aides and home attendants in 24 different home health agencies in the 5 boroughs of New York City. 9 The study found these workers: were on the front lines of the COVID 19 pandemic but felt invisible; reported a higher risk for virus transmission; received varying amounts of supplies, information, and training; relied on non-agency sources for support; and were forced to make difficult tradeoffs in work and their personal lives.…”

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“… 4 In the context of the coronavirus disease 2019 (COVID-19) pandemic, caregivers have become even more important, providing essential care to individuals with comorbid conditions and disabilities in the home. 5 , 6 …”