[Skip to Content]
[Skip to Content Landing]

Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 PandemicA Qualitative Analysis

Educational Objective
To understand the experiences of home health care workers in New York during the COVID-19 pandemic
1 Credit CME
Key Points

Question  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?

Findings  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.

Meaning  During the COVID-19 pandemic, home health care workers experienced challenges that increased their vulnerability as a workforce.

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 (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.

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 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.

Results  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.

Sign in to take quiz and track your certificates

Buy This Activity

JN Learning™ is the home for CME and MOC from the JAMA Network. Search by specialty or US state and earn AMA PRA Category 1 Credit(s)™ from articles, audio, Clinical Challenges and more. Learn more about CME/MOC

CME Disclosure Statement: Unless noted, all individuals in control of content reported no relevant financial relationships. If applicable, all relevant financial relationships have been mitigated.

Article Information

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 (mrs9012@med.cornell.edu).

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.

References
1.
Goldstein  J , McKinley  J . Coronavirus in N.Y.: Manhattan woman is first confirmed case in state. New York Times. March 1 2020. Updated March 5, 2020. Accessed March 10, 2020. https://www.nytimes.com/2020/03/01/nyregion/new-york-coronvirus-confirmed.html
2.
Centers for Disease Control and Prevention. Coronavirus disease 2019 (COVID-19): cases in the US. Updated July 23, 2020. Accessed May 1, 2020. https://www.cdc.gov/coronavirus/2019-ncov/cases-updates/cases-in-us.html
3.
Bercovitz  A , Moss  A , Sengupta  M , Park-Lee  EY , Jones  A , Harris-Kojetin  LD .  An overview of home health aides: United States, 2007.   Natl Health Stat Report. 2011;(34):1-31.PubMedGoogle Scholar
4.
US Bureau of Labor Statistics. Occupational employment statistics, May 2018. Updated March 29, 2019. Accessed March 10, 2019. https://www.bls.gov/oes/2018/may/oes311011.htm
5.
PHI. US home care workers: key facts. Accessed September 26, 2017. https://phinational.org/sites/phinational.org/files/phi-home-care-workers-key-facts.pdf
6.
Reckrey  JM , Tsui  EK , Morrison  RS ,  et al.  Beyond functional support: the range of health-related tasks performed in the home by paid caregivers In New York.   Health Aff (Millwood). 2019;38(6):927-933. doi:10.1377/hlthaff.2019.00004 PubMedGoogle ScholarCrossref
7.
Sterling  MR , Silva  AF , Leung  PBK ,  et al.  “It’s like they forget that the word ‘health’ is in ‘home health aide’”: understanding the perspectives of home care workers who care for adults with heart failure.   J Am Heart Assoc. 2018;7(23):e010134. doi:10.1161/JAHA.118.010134 PubMedGoogle Scholar
8.
Neysmith  SM , Aronson  J .  Working conditions in home care: negotiating race and class boundaries in gendered work.   Int J Health Serv. 1997;27(3):479-499. doi:10.2190/3YHC-7ET5-5022-8F6LPubMedGoogle ScholarCrossref
9.
Franzosa  E , Tsui  EK , Baron  S .  Home health aides’ perceptions of quality care: goals, challenges, and implications for a rapidly changing industry.   New Solut. 2018;27(4):629-647. doi:10.1177/1048291117740818PubMedGoogle ScholarCrossref
10.
Landes  SD , Weng  SS .  Racial-ethnic differences in turnover intent among home health aides.   J Appl Gerontol. 2020;39(5):490-501. doi:10.1177/0733464819827806PubMedGoogle ScholarCrossref
11.
Stone  R , Wilhelm  J , Bishop  CE , Bryant  NS , Hermer  L , Squillace  MR .  Predictors of intent to leave the job among home health workers: analysis of the National Home Health Aide Survey.   Gerontologist. 2017;57(5):890-899. doi:10.1093/geront/gnw075PubMedGoogle Scholar
12.
1199SEIU: United Healthcare Workers East. About 1199SEIU. Accessed September 1, 2017.https://www.1199seiu.org/
13.
1199SEIU Funds Home Care Industry Education. About us. Accessed April 25, 2017. https://www.1199seiuhomecareed.org/about/.
14.
Palinkas  LA , Horwitz  SM , Green  CA , Wisdom  JP , Duan  N , Hoagwood  K .  Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.   Adm Policy Ment Health. 2015;42(5):533-544. doi:10.1007/s10488-013-0528-y PubMedGoogle ScholarCrossref
15.
Tong  A , Sainsbury  P , Craig  J .  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.   Int J Qual Health Care. 2007;19(6):349-357. doi:10.1093/intqhc/mzm042PubMedGoogle ScholarCrossref
16.
Zoom. Home page. Accessed July 15, 2020. https://zoom.us
17.
Sterling  MR , Dell  N , Piantella  B ,  et al.  Understanding the workflow of home health care for patients with heart failure: challenges and opportunities.   J Gen Intern Med. 2020;35(6):1721-1729. doi:10.1007/s11606-020-05675-8 PubMedGoogle ScholarCrossref
18.
Sterling  MR , Dell  N , Tseng  E ,  et al.  Home care workers caring for adults with heart failure need better access to training and technology: a role for implementation science.   J Clin Transl Sci. 2020;4(3):224-228. doi:10.1017/cts.2020.36 PubMedGoogle ScholarCrossref
19.
Gershon  RR , Magda  LA , Canton  AN ,  et al.  Pandemic-related ability and willingness in home healthcare workers.   Am J Disaster Med. 2010;5(1):15-26. doi:10.5055/ajdm.2010.0002 PubMedGoogle ScholarCrossref
20.
Baron  S , McPhaul  K , Phillips  S , Gershon  R , Lipscomb  J .  Protecting home health care workers: a challenge to pandemic influenza preparedness planning.   Am J Public Health. 2009;99(suppl 2):S301-S307. doi:10.2105/AJPH.2008.157339 PubMedGoogle ScholarCrossref
21.
Ives  J , Greenfield  S , Parry  JM ,  et al.  Healthcare workers’ attitudes to working during pandemic influenza: a qualitative study.   BMC Public Health. 2009;9:56. doi:10.1186/1471-2458-9-56 PubMedGoogle ScholarCrossref
22.
Foley  G , Timonen  V .  Using grounded theory method to capture and analyze health care experiences.   Health Serv Res. 2015;50(4):1195-1210. doi:10.1111/1475-6773.12275 PubMedGoogle ScholarCrossref
23.
Merriam  SB .  Qualitative Research: A Guide To Design And Implementation. Jossey-Bass; 2009.
24.
GitHub, Inc. Qual-code visualizer. Accessed May 5, 2020. https://github.com/emtseng/qual-code-visualizer
25.
Charmaz  K.   Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications Inc; 2006.
26.
Eaves  YD .  A synthesis technique for grounded theory data analysis.   J Adv Nurs. 2001;35(5):654-663. doi:10.1046/j.1365-2648.2001.01897.x PubMedGoogle ScholarCrossref
27.
Denton  M , Zeytinoglu  IU , Davies  S , Lian  J .  Job stress and job dissatisfaction of home care workers in the context of health care restructuring.   Int J Health Serv. 2002;32(2):327-357. doi:10.2190/VYN8-6NKY-RKUM-L0XWPubMedGoogle ScholarCrossref
28.
Shotwell  JL , Wool  E , Kozikowski  A ,  et al.  “We just get paid for 12 hours a day, but we work 24”: home health aide restrictions and work related stress.   BMC Health Serv Res. 2019;19(1):907. doi:10.1186/s12913-019-4664-2 PubMedGoogle ScholarCrossref
29.
1199SEIU Funds: United Healthcare Workers East. Training and employment: COVID-19. Published 2020. Accessed April 18, 2020. https://www.1199seiubenefits.org/funds-and-services/training-and-employment/
30.
Livingston  E , Desai  A , Berkwits  M .  Sourcing personal protective equipment during the COVID-19 pandemic.   JAMA. Published onlinen March 28, 2020. doi:10.1001/jama.2020.5317 PubMedGoogle Scholar
31.
Kamerow  D .  Covid-19: the crisis of personal protective equipment in the US.   BMJ. 2020;369:m1367. doi:10.1136/bmj.m1367 PubMedGoogle ScholarCrossref
32.
Home Care Association of New York State. COVID-19 survey results: statewide home care, hospice & MLTC impacts. Published March 18, 2020. Accessed May 4, 2020. https://hca-nys.org/wp-content/uploads/2020/03/HCA-Memo-Statewide-COVID-19-Survey-Results.pdf
33.
The first rounds of coronavirus relief didn't include primary caregivers: these lawmakers want to change that. Time. Published April 30, 2020. Accessed May 1, 2020. https://time.com/5830044/coronavirus-relief-primary-caregivers/
AMA CME Accreditation Information

Credit Designation Statement: The American Medical Association designates this Journal-based CME activity activity for a maximum of 1.00  AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to:

  • 1.00 Medical Knowledge MOC points in the American Board of Internal Medicine's (ABIM) Maintenance of Certification (MOC) program;;
  • 1.00 Self-Assessment points in the American Board of Otolaryngology – Head and Neck Surgery’s (ABOHNS) Continuing Certification program;
  • 1.00 MOC points in the American Board of Pediatrics’ (ABP) Maintenance of Certification (MOC) program;
  • 1.00 Lifelong Learning points in the American Board of Pathology’s (ABPath) Continuing Certification program; and
  • 1.00 CME points in the American Board of Surgery’s (ABS) Continuing Certification program

It is the CME activity provider's responsibility to submit participant completion information to ACCME for the purpose of granting MOC credit.

Close
Want full access to the AMA Ed Hub?
After you sign up for AMA Membership, make sure you sign in or create a Physician account with the AMA in order to access all learning activities on the AMA Ed Hub
Buy this activity
Close
Want full access to the AMA Ed Hub?
After you sign up for AMA Membership, make sure you sign in or create a Physician account with the AMA in order to access all learning activities on the AMA Ed Hub
Buy this activity
Close
With a personal account, you can:
  • Access free activities and track your credits
  • Personalize content alerts
  • Customize your interests
  • Fully personalize your learning experience
Education Center Collection Sign In Modal Right
Close

Name Your Search

Save Search
With a personal account, you can:
  • Access free activities and track your credits
  • Personalize content alerts
  • Customize your interests
  • Fully personalize your learning experience
Close
Close

Lookup An Activity

or

My Saved Searches

You currently have no searches saved.

Close

My Saved Courses

You currently have no courses saved.

Close